tag:blogger.com,1999:blog-37607930206871540782024-02-21T02:22:16.441+09:00StemCells&AtomBombssdhttp://www.blogger.com/profile/14689464706421346750noreply@blogger.comBlogger200125tag:blogger.com,1999:blog-3760793020687154078.post-50791636490969480492018-04-30T19:37:00.002+09:002018-04-30T19:43:20.620+09:00Spinal Cord Injury Cure Community Survey - Part II<html>
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<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">What’s
stopping us? 2018SCICure Community Survey – Part II</span></div>
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<br /></div>
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<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">Welcome
to part II of the 2018SCI Cure Community Survey. In this next post I want to
look at how SCI Cure Community members think about involvement in finding a
cure for spinal cord injury.</span></div>
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<br /></div>
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<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">I
found some interesting information and also found a few interesting questions
that I should have asked. Those I’ll get to in the end, but first, let’ shave a
look.</span></div>
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<b><span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">On a scale of 1 to
10, with one being a strong NO and 10 being a strong YES, please rate the
following</span></b></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">1-2</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">3-4</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">5-6</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">7-9</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">9-10</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">Total of </span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">7 - 10</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">I would like to be more
involved in finding a cure for SCI.</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">6</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">2</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">18</span></div>
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<span lang="EN-US" style="font-family: メイリオ; font-size: 11.0pt;"><img height="24" src="survey%20part%20II%20-%20Copy_files/image001.png" width="18" /></span></div>
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<span lang="EN-US" style="font-family: メイリオ; font-size: 11.0pt;"><img height="24" src="survey%20part%20II%20-%20Copy_files/image002.png" width="18" /></span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">62</span></div>
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<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">I would be willing to regularly volunteer
in finding a cure for SCI.</span></div>
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<br /></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">9</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">6</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">16</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">26</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">32</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">58</span></div>
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<span lang="EN-US" style="background: white; color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">If I liked an
organization actively campaign for a cure for SCI, I would gladly donate
funds.</span></div>
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<br /></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">7</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">6</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">20</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">22</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">35</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">57</span></div>
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<span lang="EN-US" style="background: white; color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">If I liked an
organization actively campaigning for a cure for SCI, I would participate in
that group.</span></div>
<div align="left" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: left;">
<br /></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">7</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">2</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">16</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">27</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">37</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">64</span></div>
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<span lang="EN-US" style="background: white; color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">If I liked an
organization actively campaign for a cure for SCI, I would pay a monthly
subscription/due to that group</span></div>
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<br /></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">14</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">10</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">16</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">24</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">25</span></div>
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<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">49</span></div>
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<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">And
the answer that gave me the most hope:</span></div>
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<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<b><span lang="EN-US" style="background: white; color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">If you would like more information on how you can
get involved in a cure for SCI, please leave your name and email address below.</span></b></div>
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<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">About
half of all respondents left me their email address.</span></div>
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<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">Now,
let’s talk about this a little.</span></div>
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<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">First,
I have to admit that those who would do a survey like this, are probably the
first ones to raise their hands to cure paralysis, but I think we should take
heart by this showing and think of ways to turn these online results into real
activity.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-GB" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">For
the meantime, I have invited those who left their email addresses to a simple
web forum so that they can share their ideas for becoming active. I also know
that this may not be the best first step as those who raised their hands want
someone to tell them how they can be active. I guess I’ll have to try both
ways.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-GB" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">So,
after doing this survey, what questions do I think I missed.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-GB" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">My
doubts about my questions comes from after looking at the answer to the below
question.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">Currently and/or in the past, do you feel that you have personally
been involved with anything that may help lead to a cure for SCI? 44 people out
of a total of 103, about 40% answered YES.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-GB" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">I
think it can be summed up into one question, and please believe that this is
not some kind of accusation and keep following me here.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-GB" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">Let’s
re-examine some questions we’ve already looked at. This time, instead of
looking at all the respondents, let’s just look at those who are on the
positive side, those who picked a 7 to 10 response.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<br /></div>
<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="border-collapse: collapse; width: 576px;">
<tr style="height: 25.5pt;">
<td style="height: 25.5pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 219.75pt;" valign="bottom" width="293">
<div align="left" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: left;">
<b><span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">On a scale of 1 to
10, with one being a strong NO and 10 being a strong YES, please rate the
following</span></b></div>
</td>
<td style="height: 25.5pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.85pt;" width="94">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">Total responses</span></div>
</td>
<td style="height: 25.5pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.85pt;" width="94">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">Total of</span></div>
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">7 - 10</span></div>
</td>
<td style="height: 25.5pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.9pt;" width="95">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">As a %</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 219.75pt;" valign="bottom" width="293">
<div align="left" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">I would like to be more
involved in finding a cure for SCI.</span></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.85pt;" width="94">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">88</span></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.85pt;" width="94">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">62</span></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.9pt;" width="95">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">70</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 219.75pt;" valign="bottom" width="293">
<div align="left" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: left;">
<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">I would be willing to regularly volunteer
in finding a cure for SCI.</span></div>
<div align="left" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: left;">
<br /></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.85pt;" width="94">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">89</span></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.85pt;" width="94">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">58</span></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.9pt;" width="95">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">65</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 219.75pt;" valign="bottom" width="293">
<div align="left" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: left;">
<span lang="EN-US" style="background: white; color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">If I liked an
organization actively campaign for a cure for SCI, I would gladly donate
funds.</span></div>
<div align="left" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: left;">
<br /></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.85pt;" width="94">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">90</span></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.85pt;" width="94">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">57</span></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.9pt;" width="95">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">63</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 219.75pt;" valign="bottom" width="293">
<div align="left" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: left;">
<span lang="EN-US" style="background: white; color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">If I liked an
organization actively campaigning for a cure for SCI, I would participate in
that group.</span></div>
<div align="left" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: left;">
<br /></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.85pt;" width="94">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">89</span></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.85pt;" width="94">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">64</span></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.9pt;" width="95">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">72</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 219.75pt;" valign="bottom" width="293">
<div align="left" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: left;">
<span lang="EN-US" style="background: white; color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">If I liked an
organization actively campaign for a cure for SCI, I would pay a monthly
subscription/due to that group</span></div>
<div align="left" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: left;">
<br /></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.85pt;" width="94">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">89</span></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.85pt;" width="94">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">49</span></div>
</td>
<td style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 70.9pt;" width="95">
<div align="center" class="MsoNormal" style="layout-grid-mode: char; line-height: 120%; text-align: center;">
<span lang="EN-US" style="color: black; font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">55</span></div>
</td>
</tr>
</table>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">Therefore,
comparing those <b>who’ve done something </b>in the past to help CURE versus
those <b>who want to do something</b> to help cure, my questions would be this.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">What’s
stopping us?</span></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">You’ll
notice I used “us” and not “you”.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">Let
me tell you wants stopping me and then you can comment.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">Pain.
Time. Belief in efficacy. Fear I don’t know enough. </span></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char; line-height: 120%;">
<span lang="EN-US" style="font-family: "Georgia",serif; font-size: 12.0pt; line-height: 120%;">Does
that sound like you? Let me know and maybe we can keep each other’s faith and
strength high enough to do something about it.</span></div>
</div>
</body>
</html>
sdhttp://www.blogger.com/profile/14689464706421346750noreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-24477254483415149752018-03-10T21:42:00.001+09:002018-03-10T21:43:58.802+09:00Spinal Cord Injury cure community survey - Part I<head>
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<div class="WordSection1" style="layout-grid: 18.0pt;">
<div class="MsoNormal" style="layout-grid-mode: char;">
<span lang="EN-US">Ninety-nine
members of the Spinal Cord Injury community took their time to answer this
year’s survey. While not a huge number, it is similar in size to 2011, and I
always must remind myself that we are not a huge community.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<span lang="EN-US">After I
finish writing part II, I will make all the data available, but I am going to
spend a few minutes looking at what I consider to be the most interesting
results. You may see something that I missed, so please feel free to write to
me and point it out.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="border-collapse: collapse; width: 566px;">
<tr style="height: 45.0pt;">
<td style="background: white; height: 45.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 368.05pt;" valign="bottom" width="491">
<div align="left" class="MsoNormal" style="text-align: left;">
<b><span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">Do you believe that a cure
for SCI is necessary so that people living with SCI can have an improved
quality of life and not have to suffer secondary complications?</span></b></div>
</td>
<td nowrap="" style="height: 45.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 20.0mm;" valign="bottom" width="76">
<div align="left" class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: "MS Pゴシック";"> </span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 368.05pt;" valign="bottom" width="491">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">YES</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 20.0mm;" valign="bottom" width="76">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">93</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 368.05pt;" valign="bottom" width="491">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">NO</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 20.0mm;" valign="bottom" width="76">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">3</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 368.05pt;" valign="bottom" width="491">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">Undecided</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 20.0mm;" valign="bottom" width="76">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">2</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 368.05pt;" valign="bottom" width="491">
<div align="left" class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: "MS Pゴシック";"> </span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 20.0mm;" valign="bottom" width="76">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">98</span></div>
</td>
</tr>
</table>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<span lang="EN-US">People aren’t
fooling themselves. Even with all the progress science has made in reducing
secondary complications and improving quality of life for those of us in
chairs, over 90% of respondents believe that CURE is a necessity to answering these
issues.</span></div>
<a name='more'></a><html>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="border-collapse: collapse; width: 566px;">
<tr style="height: 15.0pt;">
<td rowspan="2" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 261.75pt;" valign="bottom" width="349">
<div align="left" class="MsoNormal" style="text-align: left;">
<b><span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">Rate the following reasons
that are often given as barriers in the way of a cure for SCI.</span></b></div>
</td>
<td colspan="5" nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 162.7pt;" valign="bottom" width="217">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">Important>>>>>less
important</span></div>
</td>
</tr>
<tr style="height: 20.25pt;">
<td nowrap="" style="height: 20.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.5pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">1</span></div>
</td>
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<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">2</span></div>
</td>
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<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">3</span></div>
</td>
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<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">4</span></div>
</td>
<td nowrap="" style="height: 20.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">5</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 261.75pt;" valign="bottom" width="349">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">The science necessary to
cure paralysis.</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.5pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">41</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">16</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">13</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">5</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">8</span></div>
</td>
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<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 261.75pt;" valign="bottom" width="349">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">Lack of government
funding.</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.5pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">58</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">11</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">6</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">4</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">10</span></div>
</td>
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<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 261.75pt;" valign="bottom" width="349">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">Lack of non-governmental
funding.</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.5pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">42</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">17</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">11</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">10</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">8</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 261.75pt;" valign="bottom" width="349">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">Lack of collaboration
amongst scientists.</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.5pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">33</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">17</span></div>
</td>
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<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">21</span></div>
</td>
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<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">8</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">7</span></div>
</td>
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<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 261.75pt;" valign="bottom" width="349">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">Lack of activity in the
SCI community.</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.5pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">20</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">19</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">22</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">11</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 32.55pt;" valign="bottom" width="43">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">12</span></div>
</td>
</tr>
</table>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<span lang="EN-US">This issue of
money vs science as the main barrier to cure was overall rather evenly split,
but for those who picked money as a problem over science as the biggest
barrier, money did win out. What do you think? </span></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<span lang="EN-US">Personally, I
don’t believe that either of those are the main problem. First, don’t get me
wrong; I don’t think there is the science out there, yet, to cure paralysis, but
I’m not sure if even more money would improve that at the moment. I don’t have
the exact answer myself, but one thing that did shock me was that “lack of
activity in the SCI community” didn’t rank higher. I’ve always felt that this
riddle is as much up to us as it is the scientists.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="border-collapse: collapse; width: 566px;">
<tr style="height: 25.5pt;">
<td style="height: 25.5pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 361.0pt;" valign="bottom" width="481">
<div align="left" class="MsoNormal" style="text-align: left;">
<b><span lang="EN-US" style="color: black; font-family: "Verdana",sans-serif; font-size: 10.0pt;">On a
scale of 1 to 10, rate how educated you feel you are about the science behind
SCI and SCI cure.</span></b></div>
</td>
<td nowrap="" style="height: 25.5pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 63.75pt;" valign="bottom" width="85">
<div align="left" class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: "MS Pゴシック";"> </span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 361.0pt;" valign="bottom" width="481">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">Not at all knowledgeable
1~2</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 63.75pt;" valign="bottom" width="85">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">12</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 361.0pt;" valign="bottom" width="481">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">3~4</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 63.75pt;" valign="bottom" width="85">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">13</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 361.0pt;" valign="bottom" width="481">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">5~6</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 63.75pt;" valign="bottom" width="85">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">22</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 361.0pt;" valign="bottom" width="481">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">7~8</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 63.75pt;" valign="bottom" width="85">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">38</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 361.0pt;" valign="bottom" width="481">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">Very knowledgeable
9~10</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 63.75pt;" valign="bottom" width="85">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">8</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 361.0pt;" valign="bottom" width="481">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">Total</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 63.75pt;" valign="bottom" width="85">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">93</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 361.0pt;" valign="bottom" width="481"></td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 63.75pt;" valign="bottom" width="85"></td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 361.0pt;" valign="bottom" width="481">
<div align="left" class="MsoNormal" style="text-align: left;">
<b><span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">How do you get most of
your information about SCI cure?</span></b></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 63.75pt;" valign="bottom" width="85">
<div align="left" class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: "MS Pゴシック";"> </span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 361.0pt;" valign="bottom" width="481">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">Online forums</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 63.75pt;" valign="bottom" width="85">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">76</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 361.0pt;" valign="bottom" width="481">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">Blogs</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 63.75pt;" valign="bottom" width="85">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">45</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 361.0pt;" valign="bottom" width="481">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">Magazines/Newspapers
(online or paper including scientific journals)</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 63.75pt;" valign="bottom" width="85">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">42</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 361.0pt;" valign="bottom" width="481">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">Vlogs/podcasts</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 63.75pt;" valign="bottom" width="85">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">16</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 361.0pt;" valign="bottom" width="481">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">books</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 63.75pt;" valign="bottom" width="85">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">11</span></div>
</td>
</tr>
</table>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<span lang="EN-US">Of course,
those who did the survey are the most interested in cure and they would be the
ones who are the most educated on cure, but looked at simply, even in this
group, “not at all knowledgeable” half and the “very knowledgeable half” are
quite similar. </span></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<span lang="EN-US">I know that
if we’re going to be involved as a community in cure, we’ll have to improve the
“knowledgeable” rating, including my own.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<span lang="EN-US">And how do
most people study; well, it looks like TOGETHER is the big answer. Online
forums, where people share information and materials, is the place where we
have to reach if we’re going to have an impact.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<span lang="EN-US">Which leads
me to the next part; people’s reaction to www.CareCure.com.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="border-collapse: collapse; width: 462px;">
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 311.35pt;" valign="bottom" width="415">
<div align="left" class="MsoNormal" style="text-align: left;">
<b><span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">Do you know about the
online Cure Forum at www.CareCure.org</span></b></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="left" class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: "MS Pゴシック";"> </span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 311.35pt;" valign="bottom" width="415">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">YES</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">73</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 311.35pt;" valign="bottom" width="415">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">NO</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">27</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 311.35pt;" valign="bottom" width="415">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">Total</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">100</span></div>
</td>
</tr>
</table>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="border-collapse: collapse; width: 462px;">
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 311.35pt;" valign="bottom" width="415">
<div align="left" class="MsoNormal" style="text-align: left;">
<b><span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">Do you ever visit the
online Care Forum at www.CareCure.org?</span></b></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="left" class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: "MS Pゴシック";"> </span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 311.35pt;" valign="bottom" width="415">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">YES</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">68</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 311.35pt;" valign="bottom" width="415">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">NO</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">5</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 311.35pt;" valign="bottom" width="415">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">Total</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">73</span></div>
</td>
</tr>
</table>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<span lang="EN-US">Even with
this many people responding that they know about CareCure, I was still shocked
that it wasn’t higher and that basically on 68% used it as a resource.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="border-collapse: collapse; width: 462px;">
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 311.35pt;" valign="bottom" width="415">
<div align="left" class="MsoNormal" style="text-align: left;">
<b><span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">How would you describe
your participation on the Cure Forum at www.CareCure.org?</span></b></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="left" class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: "MS Pゴシック";"> </span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 311.35pt;" valign="bottom" width="415">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">I only read the posts</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">25</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 311.35pt;" valign="bottom" width="415">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">I read the posts but
rarely write posts</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">23</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 311.35pt;" valign="bottom" width="415">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">I read the posts and
sometimes write posts</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">13</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 311.35pt;" valign="bottom" width="415">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">I read the posts and
actively write posts.</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">6</span></div>
</td>
</tr>
<tr style="height: 15.75pt;">
<td nowrap="" style="height: 15.75pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 311.35pt;" valign="bottom" width="415">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">total</span></div>
</td>
<td nowrap="" style="height: 15.75pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">67</span></div>
</td>
</tr>
</table>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<span lang="EN-US">And that only
19 people sometimes or actively write posts (especially since most of the hits
to this survey were from CareCure) really shocked me. </span></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<span lang="EN-US">So, even
while people consider themselves rather knowledgeable and most of the study
comes from online forums, people are not being engaged; they’re reading and
learning, but maybe with no place to put this knowledge.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="border-collapse: collapse; width: 283px;">
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 176.7pt;" valign="bottom" width="236">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">On a scale of 1 to 10,
how would you rate your experience with the Cure Forum?</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="left" class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: "MS Pゴシック";"> </span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 176.7pt;" valign="bottom" width="236">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">1</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">1</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 176.7pt;" valign="bottom" width="236">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">4</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">3</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 176.7pt;" valign="bottom" width="236">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">5</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">8</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 176.7pt;" valign="bottom" width="236">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">6</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">6</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 176.7pt;" valign="bottom" width="236">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">7</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">9</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 176.7pt;" valign="bottom" width="236">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">8</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">16</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 176.7pt;" valign="bottom" width="236">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">9</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">10</span></div>
</td>
</tr>
<tr style="height: 14.25pt;">
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 176.7pt;" valign="bottom" width="236">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">10</span></div>
</td>
<td nowrap="" style="height: 14.25pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">11</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 176.7pt;" valign="bottom" width="236">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">total</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.45pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">64</span></div>
</td>
</tr>
</table>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="border-collapse: collapse; width: 415px;">
<tr style="height: 30.0pt;">
<td style="height: 30.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 275.95pt;" valign="bottom" width="368">
<div align="left" class="MsoNormal" style="text-align: left;">
<b><span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">How would you describe
the current amount of information and activity on the Cure Forum?</span></b></div>
</td>
<td nowrap="" style="height: 30.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.4pt;" valign="bottom" width="47">
<div align="left" class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: "MS Pゴシック";"> </span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 275.95pt;" valign="bottom" width="368">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">Activity has dropped off
significantly in the past two years.</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.4pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">16</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 275.95pt;" valign="bottom" width="368">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">Activity has dropped off
somewhat in the past two years.</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.4pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">16</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 275.95pt;" valign="bottom" width="368">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">Activity has not
markedly changed in the past two years.</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.4pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">22</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 275.95pt;" valign="bottom" width="368">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">Activity has somewhat
increased in the past two years.</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.4pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">5</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 275.95pt;" valign="bottom" width="368">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Calibri",sans-serif;">Activity has
significantly increased in the past two years.</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.4pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">2</span></div>
</td>
</tr>
<tr style="height: 15.0pt;">
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 275.95pt;" valign="bottom" width="368">
<div align="left" class="MsoNormal" style="text-align: left;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">total</span></div>
</td>
<td nowrap="" style="height: 15.0pt; padding: 0mm 4.95pt 0mm 4.95pt; width: 35.4pt;" valign="bottom" width="47">
<div align="right" class="MsoNormal" style="text-align: right;">
<span lang="EN-US" style="color: black; font-family: "Arial",sans-serif;">61</span></div>
</td>
</tr>
</table>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<span lang="EN-US">People are
giving CareCure high grades for their experience on the site, but the majority
believe that activity on the site has dropped.</span></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<br /></div>
<div class="MsoNormal" style="layout-grid-mode: char;">
<span lang="EN-US">So how do we
engage people? How do people want to be involved? That will be the focus of
part II. Please stay tuned.</span></div>
</div>
</body>
</html>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-63253792214203260532018-02-25T21:19:00.000+09:002018-02-25T21:21:54.741+09:00Spinal cord injury community survey - less than five minutes<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.oxbowpartners.co.uk/wp-content/uploads/2016/07/Survey-e1469779898739.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://www.oxbowpartners.co.uk/wp-content/uploads/2016/07/Survey-e1469779898739.jpg" data-original-height="400" data-original-width="800" height="100" width="200" /></a></div>
<span style="font-family: inherit; font-size: large;">Back in 2010, I conducted a survey into the SCI community and the feeling around cure and their own cure activity. Since that time, at lot has changed (a lot more trials), and nothing has changed (there still isn't a cure).</span><br />
<span style="font-family: inherit; font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">If you have five minutes, it would be great if you could help with this survey.</span></span><br />
<span style="font-family: inherit; font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Why?</span></span><br />
<span style="font-family: inherit; font-size: large;"><br /></span>
<br />
<ul>
<li><span style="font-family: inherit; font-size: large;">It may get you more involved in a cure for spinal cord injury.</span></li>
<li><span style="font-family: inherit; font-size: large;">It may give you some ideas for how to participate.</span></li>
<li><span style="font-family: inherit; font-size: large;">You may give others some ideas on how to get more people to participate.</span></li>
</ul>
<span style="font-family: inherit; font-size: large;"><br /></span>
<span style="font-family: inherit; font-size: large;">I have been in touch with different groups involved in cure, and they are interested to know your opinions.</span><br />
<span style="font-family: inherit; font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">At the end of the survey, there is an optional chance to leave your name for more information.</span></span><br />
<span style="font-family: inherit; font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
</span><span style="font-family: "georgia" , "times new roman" , serif;"><span style="font-family: inherit; font-size: large;">Thanks for taking the time.
</span><button onclick="javascript:window.open('http://www.emailmeform.com/builder/form/dmc647XSqG607O3');" style="font-family: georgia, "times new roman", serif;" type="button">Take the survey here</button></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-70165585662776265212018-01-21T18:59:00.000+09:002018-01-21T19:01:14.625+09:00Still here in 2018!<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I hope that you and your friends and families all had a wonderful new year's holidays.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Getting back to work now and just like you, I'm still trying to catch up. I'm a little late getting back to the site, but it's not forgotten.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Actually, over the holidays, I had a chance to make a few long anticipated changes to the site that you may or may not notice.</span></div>
<div>
<ul>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">The site is now at www.StemCellsandAtomBombs.org and it's the window to all the language versions.</span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">The language versions are all at their own subdomains:</span></li>
</ul>
<ol>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><a name='more'></a>StemCellsandAtomBombs: en.StemCellsandAtomBombs.org</span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">CelulasMadreyBombasAtomicas: sp.StemCellsandAtomBombs.org</span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">CelluleStaminalieBombeAtomiche: it.StemCellsandAtomBombs.org</span></li>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">幹細胞&原爆: jp.StemCellsandAtomBombs.org</span></li>
</ol>
<ul>
<li><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Finally, all the posts are linked with the other language versions which will make it easier for you to see what's available in your own language.</span></li>
</ul>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">So, what will I be working on in 2018?</span><br />
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I hope to give you some answers about bowel, bladder, and sexual function from the current epidural stimulation trials going on in Kentucky. So far, the researchers on this project have been very forthcoming with information and I hope that we can continue that relationship with them so as to get you the information you've been waiting for.</span><br />
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Also, planning on expanding out the questions and BBS and epidural stimulation to the other centres. If you have some ideas on the centres I should be approaching, all information is welcome.</span><br />
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Actually, I've been asked to participate in a bowel/bladder project being worked on by the North American Spinal Cord Injury Consortium and I'm really looking forward to it.</span><br />
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I'm also consulting with a few people at the moment about a survey of the SCI community in regards to their attitudes about a number of certain issues affecting cure. I hope to have this out next week or so.</span><br />
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Please stay tuned.</span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-6548232210021317442017-12-31T17:00:00.005+09:002018-01-21T19:00:05.439+09:00Wishing you all a "Cureful" New Year!<div class="" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUjCaY8N5NnQvjMlw6BrbDnDl2bSN5xMznUpUFgq_ZIMOgiKdMPySnlBXYn-HeKJ8enqM3D6D-eqW3sD5XicUez-bTwlkURRrXhPirQP_5YnpzTLixF3HgfIzJ_8QmLwnXfvBhy24c0WRZ/s1600/400px-Sunset_Hopping.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><img border="0" data-original-height="304" data-original-width="400" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUjCaY8N5NnQvjMlw6BrbDnDl2bSN5xMznUpUFgq_ZIMOgiKdMPySnlBXYn-HeKJ8enqM3D6D-eqW3sD5XicUez-bTwlkURRrXhPirQP_5YnpzTLixF3HgfIzJ_8QmLwnXfvBhy24c0WRZ/s320/400px-Sunset_Hopping.jpg" width="320" /></span></a><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">As we're about to start 2018, I'd like to send you all a quick message saying thank you for all your support over the years. This blog has had it's ups and downs, mostly based on my health, but I thank the regular readers for your encouragement over the years.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">The blog started in 2010 and even though I'm still writing about the search for a cure for paralysis caused by spinal cord injury and I am still hopeful that a cure will be found. Some say that even if a cure can't help them because they've been injured for so long, they hope that it will help others. This is very noble, but while I want a cure for all, I still have hope that I too will be included in this cure.</span></div>
<div>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
<div>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"></span><br />
<a name='more'></a><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">It's great to be back at this and while I'm a little slower than I would like, I think I'm doing some interesting work on epidural stimulation and how it will affect bowel, bladder, and sexual function return. I'm planning on doing more of this work and hope to track all the current epidural stimulation trials in regards to BBS return. My goal, is to get down to the facts of this and to see clearly if it's a type of therapy that the spinal cord injury community should support or not. Many have made up their minds that this therapy is worth pursuing, but so far, I've not seen the facts that make this a worthwhile pursuit. So with an open mind, I will keep looking for more information to give you.</span></div>
<div>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
<div>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Also, I'd like to put a new community survey out in the new year. I think that it's really worth hearing from all those who make up our community. Sometimes great ideas are spawned when we cooperate and share information and ideas.</span></div>
<div>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
<div>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I wish you and all of your of families a joyous new year and let's hope that the new year is also filled with cure.</span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-31687015505148740972017-12-21T11:56:00.000+09:002018-03-04T15:43:47.582+09:00We need more info about BBS return and epidural stimulation <html>
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<a class="active" href="http://stemcellsandatombombs.blogspot.jp/2017/12/we-need-more-info-about-bbs-return-and.html#English">English</a>
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<span style="font-size: large;">Hello everyone. I've spent the past weeks trying to craft together some questions about BBS (bladder, bowel, sexual function) return to ask to Dr Susan Harkema's team involved in epidural stimulation trials. My time was not only spent writing, but consulting with other activists in the community as I wanted to make sure that my questions were both correct and fair. </span><br />
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<span style="font-size: large;"><br /></span></div>
<div>
<span style="font-size: large;">As you may know, the trial, with many sponsors including CDRF (Christopher and Donna Reeve Foundation), and marketed under the <a href="http://reevebigidea.org/" target="_blank">BigIdea</a> (which I think is wonderful marketing) has produced two papers and has put out some information about BBS return. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">See the last two posts for more information about the trials and my interest in them.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"></span><br />
<a name='more'></a><span style="font-size: large;">Below is the question I will be sending to Dr Harkema as I know there is a very big interest in the spinal cord injury community in the trials and especially in the claims of some BBS return. I think hearing directly from the scientist as opposed to the media will give us a better idea about what this trial will mean for us.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">___________________</span><br />
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Thank you once again for your kind assistance. I actually had a few more questions, specifically about BBS.</span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I am happy to hear that the BBS study will be integrated, even if not completely, in the trial. As you know, time and time again, BBS return hits the top of the wish list for functional return.</span></span></div>
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<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><u>Part I</u></span></span></div>
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<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I have been reading about other kinds of electrical stimulation and BBS and came across the Finetech-Brindley Bladder Control System which uses anterior sacral nerve stimulation. It seems that there have been very good results with this and another clinical trial is currently going on which will test it without the need for a rhizotomy. As you also aware, Medtronic IntrastimII also uses electrical stimulation to help BBS return.</span></span></div>
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<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<b><span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Question 1:</span></span></b></div>
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<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">If electrical stimulation has already been proven to affect BBS return, why was improvement in BBS so unexpected in the initial study of the four men and no preparation made to measure any return?</span></span></div>
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<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Is epidural stimulation and anterior sacral nerve stimulation so fundamentally different that a return was impossible to hypothesise?</span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<br /></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><u>Part II</u></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I also have some comments and questions regarding the reporting of improvements in BBS. I understand that since the return was unexpected there was no measurements of the original four participants BBS prior to the trial to establish a baseline. Therefore, once the trial was completed, you couldn’t compare BBS before and after and thus didn’t include BBS return in either of the two papers published on the epidural stimulation trial in Louisville. </span></span></div>
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<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">But there has already been wide spread reporting on the BBS return. The reports range from “improvements” to “restored”.</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span lang="EN-GB">The <a data-saferedirecturl="https://www.google.com/url?hl=en-GB&q=https://www.christopherreeve.org/about-us/executive-memos/introducing-the-big-idea&source=gmail&ust=1513910196259000&usg=AFQjCNEkIY323rmg5Qob4b3VZYXK9ONKhA" href="https://www.christopherreeve.org/about-us/executive-memos/introducing-the-big-idea" style="color: #1155cc;" target="_blank">CRDF website reported</a> on 9 October 2014 that, </span><span lang="EN-US" style="background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333;">"</span><i><span lang="EN-US" style="background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #252525;">Even more surprisingly, all four participants experienced significant improvements in autonomic functions, including bladder, bowel and sexual function, as well as temperature regulation.</span></i><span lang="EN-US" style="background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #252525;">"</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span lang="EN-US" style="background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #252525;"><br /></span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span lang="EN-GB">On 10 April 2014, <a data-saferedirecturl="https://www.google.com/url?hl=en-GB&q=https://webcache.googleusercontent.com/search?q%3Dcache:70ZrWj8yc4sJ:https://www.mobilityworks.com/blog/breakthrough-sci-study/%2B%26cd%3D12%26hl%3Den%26ct%3Dclnk%26gl%3Djp&source=gmail&ust=1513910196260000&usg=AFQjCNHlc1mDEjD8Xe4L0wJOTi3lCtwNig" href="https://webcache.googleusercontent.com/search?q=cache:70ZrWj8yc4sJ:https://www.mobilityworks.com/blog/breakthrough-sci-study/+&cd=12&hl=en&ct=clnk&gl=jp" style="color: #1155cc;" target="_blank">MobilityWorks reported</a> that, “</span><i><span lang="EN-US" style="background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: black;">Rob Summers, showing the most advanced results, has had bowel, bladder and sexual function restored</span>.</i><span lang="EN-US" style="background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: black;">” </span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span lang="EN-US" style="background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: black;"><br /></span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span lang="EN-US" style="background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: black;">And <a data-saferedirecturl="https://www.google.com/url?hl=en-GB&q=http://edition.cnn.com/2014/07/31/health/paralysis-sexual-function/index.html&source=gmail&ust=1513910196260000&usg=AFQjCNFafq_yInxENDalP_fRPL68nFY1ug" href="http://edition.cnn.com/2014/07/31/health/paralysis-sexual-function/index.html" style="color: #1155cc;" target="_blank">CNN reported</a> 2 January 2015 that, “</span><i><span lang="EN-US" style="background: rgb(254 , 254 , 254); color: #262626;">The men, who all experienced varying levels of sexual dysfunction, say their sex lives returned to normal once the stimulators were implanted.</span></i><span lang="EN-US" style="background: rgb(254 , 254 , 254); color: #262626;">”</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span lang="EN-US" style="background: rgb(254 , 254 , 254); color: #262626;"><br /></span></span></div>
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<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I know that these are not the words of the researchers, but of supporters and the news media. The problem is that since there has been no reporting directly from your team, we in the spinal cord injury community don’t know what to believe.</span></span></div>
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<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<b><span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Question 2 </span><span style="font-family: "georgia" , "times new roman" , serif;">(I think Dr Harkema might be best to answer this as the main investigator in the initial trial)</span></span></b></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">As I was told in the past emails, much of the BBS return study will be based on questionnaires, therefore wouldn’t it be possible to do a before and after questionnaire with the four original participants now?</span></span></div>
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<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Even if the questionnaire is not possible, would it be possible to explain in layman’s terms what was restored?</span></span></div>
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<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span></div>
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<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">For example:</span></span></div>
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<li><span style="font-size: large;">Do the men still need to need to catheterise themselves?</span></li>
<li><span style="font-size: large;">Do they know when their bladders and bowels are full?</span></li>
<li><span style="font-size: large;">Do they still need a specific bowel programme with the use of digital stimulation, laxatives, and/or suppositories?</span></li>
<li><span style="font-size: large;">Have they had any accidents with bladder and bowel since their trial ended?</span></li>
<li><span style="font-size: large;">Do they still need to use any medications to achieve and maintain erections?</span></li>
<li><span style="font-size: large;">Are psychogenic erections possible now?</span></li>
<li><span style="font-size: large;">Can they experience climax and/or ejaculation?</span></li>
</ul>
<br />
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Answering these questions will help us in the community know more about BBS return and epidural stimulation as we all know that what’s reported in the media isn’t always very accurate when it comes to science. </span></span></div>
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<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">To be honest, many of those I am in contact with are sceptical of the current results regarding functional return in motor skills as it relates to their quality of life, but would be happy even if it only worked on BBS.</span></span></div>
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<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I wouldn’t even dare to ask you to answer these questions if the media weren’t already reporting on it. Actually, more importantly than the media, CDRF, one of the main sponsor is reporting that there is return. </span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I therefore sincerely ask you to give the community more information on what return these four men experienced. If you feel that answering these questions in an email would be difficult, I would be truly happy to interview you directly.</span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span></div>
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<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I know we are entering the holiday season so I know you are very busy and I appreciate all your time in dealing with my questions. I have many readers who are excited by your work and want more information.</span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span></div>
<div class="m_-2945938254752426998gmail-MsoNormal" style="background-color: white; color: #222222;">
<span lang="EN-GB"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I wish you and yours a happy holiday season.</span></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-65402939503177662612017-12-09T21:26:00.000+09:002018-01-21T19:08:55.679+09:00"An unexpected success story". Really? I'd like more info. PART II<html>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLh9SVW1MV0jo4VLsr9SMTAYKSIDYVAkCHqH1Ac2o6B1T8PYnjriTJbEZBy3H1ke6iKlvcpU7oDdJHfr_ok_GGBXafbUkS93wXf0INUTxg6jaJY3kxUuj9GRKmeqFT4B-1-tSGpbHBlep-/s1600/peeboy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="250" data-original-width="250" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLh9SVW1MV0jo4VLsr9SMTAYKSIDYVAkCHqH1Ac2o6B1T8PYnjriTJbEZBy3H1ke6iKlvcpU7oDdJHfr_ok_GGBXafbUkS93wXf0INUTxg6jaJY3kxUuj9GRKmeqFT4B-1-tSGpbHBlep-/s200/peeboy.jpg" width="200" /></a></div>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Just so you know, this post is Part II. If you haven't yet read it, <a href="http://stemcellsandatombombs.blogspot.jp/2017/11/an-unexpected-success-story-really-id.html" target="_blank">Part I is here</a>.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">It took me a little time to get back to Part II as I've been waiting on some information. It hasn't all arrived yet, but I figure I'll get down what information I can now.</span></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Sine it's been a few weeks I'll make a short round up of Part I...</span></div>
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<ul>
<li><span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">Epidural stimulation trials on standing and stepping at the University of Louisville, supported by the Christopher & Donna Reeve Foundation (CDRF), receive new press attention after the lead researcher Susan Harkema published a paper with her results.</span></li>
<li><span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;">But more importantly, already as early as October 2014 (and probably before that too), the CDRF website reported that, </span><span style="background-color: white;">"</span><span style="background-color: white;"><span style="font-family: "georgia" , "times new roman" , serif;"><i>Even more surprisingly, all four participants </i></span><span style="font-family: "georgia" , "times new roman" , serif;"><i>experienced significant improvements in autonomic functions, including bladder, bowel and sexual function, as well as temperature regulation.</i>"</span></span></span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: white; color: #252525;"><a name='more'></a>After this I contacted some folks at the National Institute of Biomedical Imaging and Engineering (NIH) who explained to me that they had put together a consortium back in 2015 of doctors, researchers, scientists with "<i>t</i></span></span><span style="background-color: white; color: #333333;"><i>he therapeutic goal is improving key autonomic functions - bladder, bowel, and sexual - effectively and safely</i>".</span></span></li>
<li><span style="background-color: white; color: #333333; font-family: "georgia" , "times new roman" , serif; font-size: large;">This got me thinking even more about the return of BBS that was already reported so I contacted the lab in Louisville to see if they would be doing a proper study of BBS from now on. Great news is that <a href="https://clinicaltrials.gov/ct2/show/NCT03036527?term=hubscher&cond=Spinal+Cord+Injuries&cntry1=NA%3AUS&rank=1" target="_blank">BBS will be part of the ongoing study</a>.</span></li>
</ul>
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<div>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">First of all, I want to admit that I am cynical about the role of epidural stimulation in regards to any real cure for paralysis. I don't think that the current return of some motor function would do much to really improve quality of life. </span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Why? Well, as reported, after many years, I believe it was 2011, one of the subjects is able to stand up. Not step, but stand up. So I just don't see how we can expect wide scale use when six years of locomotor training has to go into it just for the end result to be standing up.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">BUT...</span><br />
<br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I have to admit that I am excited about the report mentioned above, <span style="background-color: white; color: #444444;">"</span><span style="background-color: white; color: #444444;"><span style="font-family: "georgia" , "times new roman" , serif;"><i>Even more surprisingly, all four participants </i></span><span style="font-family: "georgia" , "times new roman" , serif;"><i>experienced significant improvements in autonomic functions, including bladder, bowel and sexual function, as well as temperature regulation.</i>" </span></span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="background-color: white; color: #444444;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></span></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="background-color: white; color: #444444;"><span style="font-family: "georgia" , "times new roman" , serif;">I tell you, this echoes in my brain. </span></span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="background-color: white; color: #444444;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></span></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="background-color: white; color: #444444;"><span style="font-family: "georgia" , "times new roman" , serif;">Which one of us paralysed folks wouldn't want the return of these functions? In fact, many who I've spoken to don't have a lot of faith in epidural stimulation getting us walking again, but all hope about its effects on BBS.</span></span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTl6mOuOQDRW3c3NXq77kZHFc4de9nGQWH0lYMamQ9T9xbF4X9A-TqPUAsp6crB9qaNHEbgyzgsUUfKK4oqURpNiBx2U8svpClVdtDVI-PBdq5W78iM8Ehp09IEE55p5JMjAh2Zv3IUWZ7/s1600/brindley.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="356" data-original-width="228" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTl6mOuOQDRW3c3NXq77kZHFc4de9nGQWH0lYMamQ9T9xbF4X9A-TqPUAsp6crB9qaNHEbgyzgsUUfKK4oqURpNiBx2U8svpClVdtDVI-PBdq5W78iM8Ehp09IEE55p5JMjAh2Zv3IUWZ7/s200/brindley.jpg" width="127" /></a></div>
<span style="background-color: white; color: #444444;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">And this is where I started looking for the <i>more info</i> like it says in the title. This led to <a href="https://en.wikipedia.org/wiki/Giles_Brindley" target="_blank">Dr. Giles Brindley</a> who made his own BBS machine (<a href="https://en.wikipedia.org/wiki/Sacral_anterior_root_stimulator" target="_blank">sacral anterior root stimulator</a>) back in the late 60s with succesful trials in the early 80s. A 1995 paper (fourteen years before I was paralysed) "</span></span><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Sacral anterior root stimulation for bladder control in patients with a complete lesion of the spinal cord"</span><span style="background-color: white; color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;"> in the European Journal of Neurosurgery stated:</span><br />
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<blockquote class="tr_bq" style="layout-grid-mode: char; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0mm;">
<span lang="ES-VE"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">"<i>A Finetech-Brindley bladder
controller was implanted in 17 patients with a complete lesion of the spinal
cord...Our patients have now been followed-up for periods varying between 1 and
6 years. In all 17 patients, the bladder capacity has been increased; 16
patients have a residual volume of less then 30 ml, urinary tract infection is
rare; 12 patients are fully continent. All male patients can achieve a full
sustained erection by means of the implant and 13 patients are using the
implant for bowel function.</i>"</span></span></blockquote>
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<br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">And there are more and more studies. You don't need me to google for you. Type it in...</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Actually, this has been on the market since 1982. their web site states that:</span><br />
<blockquote class="tr_bq" style="layout-grid-mode: char; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0mm;">
<i><span style="font-size: large;"><span lang="ES-VE"><span style="font-family: "georgia" , "times new roman" , serif;">The Finetech Brindley Bladder
Control System (branded as VOCARE in the US) is an active
implantable medical device and is intended for restoration of bladder
function after complete spinal cord injury. Secondary functions
include the aiding of bowel evacuation and penile erection. <a href="https://www.blogger.com/null" name="Spinal_cord_injuries"></a>Spinal cord injuries patients can benefit from this system to:-</span></span><span lang="ES-VE"><span style="font-family: "georgia" , "times new roman" , serif;">Restore bladder control; </span></span><span lang="ES-VE"><span style="font-family: "georgia" , "times new roman" , serif;">Bowel evacuation; </span></span><span lang="ES-VE"><span style="font-family: "georgia" , "times new roman" , serif;">Penile erection</span></span></span></i></blockquote>
<br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">It's all there. I've actually written to some doctor biographers of Dr. Bridley and will report back with some more information once I get it.</span><br />
<span style="background-color: white; color: #444444;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span>
<span style="background-color: white; color: #444444;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Before I go to far down this road, I'm going to stop. Trust me, or don't and google it yourself, there are loads of studies and <a href="http://www.newmobility.com/2017/01/bladder-bowels-control-life/" target="_blank">devices</a> aimed at the neurogenic bladder and bowel which have been tested on those with spinal cord injury. </span></span><br />
<span style="background-color: white; color: #444444;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span>
<span style="background-color: white; color: #444444;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">The point of this blog post was supposed to be about the CDRF funded study in Louisville.</span></span><br />
<span style="background-color: white; color: #444444;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span>
<span style="background-color: white; color: #444444;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">So where do I go from here?</span></span><br />
<span style="background-color: white; color: #444444;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="background-color: white; color: #444444;"><span style="font-family: "georgia" , "times new roman" , serif;">If we already have tested and proven electrical devices for BBS why was the "Unexpected Success Story" so surprising? The CDRF site reported that, "</span></span><span style="background-color: white; color: #252525;"><i>Even more surprisingly, all four participants experienced significant improvements in autonomic functions, including bladder, bowel and sexual function, as well as temperature regulation.</i>" (9 October 2014).</span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="background-color: white; color: #252525;"><br /></span></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="background-color: white; color: #252525;">I guess my next step is an email back to the Louisville lab to ask why they were surprised. An even bigger question I have, and I will ask is this...</span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="background-color: white; color: #252525;"><br /></span></span>
<span style="color: #252525; font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="background-color: white;">"While I understand that the return of some BBS function was unexpected and you had no chance to establish a baseline of the participants prior to the start of the study, why are there no <b>concrete </b>reports of the <i>significant improvements</i> mentioned on the CDRF website? I could understand if there was no reporting of BBS return, but since it has been reported many times, I don't see the reason to keep specifics secret.</span></span><br />
<span style="color: #252525; font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="background-color: white;"><br /></span></span>
<span style="color: #252525; font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="background-color: white;">"BBS return is widely rated number one with paraplegics, and just below breathing and arm function for quadraplegics, in multiple surveys and many have a lot of hope that your study will prove effective for BBS. I ask if more specific information can be given regarding the significant improvements that were made."</span></span><br />
<span style="color: #252525; font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="background-color: white;"><br /></span></span>
<span style="color: #252525; font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="background-color: white;">I'll let you all know the answer when it comes.</span></span></div>
Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-3760793020687154078.post-54637449049614751272017-11-14T16:11:00.000+09:002017-12-29T11:18:05.495+09:00"An unexpected success story". Really? I'd like more info. PART I<html>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large; margin-left: 1em; margin-right: 1em;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhUgnjZ4SdDBjD4qncIFVgDQVBE8tIrp_nO5D5FXfeaJYcejHN8S5_mIQk9SY5-0nET966wcdDRsDBUmEmbEYpw3lCiQWzPEFHfQzFB5ZbIRMvRUPLqf-L7qPIFy3n2NMlE3oSs72F7Mrr/s1600/bbs.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="373" data-original-width="1247" height="190" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhUgnjZ4SdDBjD4qncIFVgDQVBE8tIrp_nO5D5FXfeaJYcejHN8S5_mIQk9SY5-0nET966wcdDRsDBUmEmbEYpw3lCiQWzPEFHfQzFB5ZbIRMvRUPLqf-L7qPIFy3n2NMlE3oSs72F7Mrr/s640/bbs.jpg" width="640" /></a></span></div>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">This is a story about BBS (bladder, bowel, and sexual function) return, but you'll have to stay with me a bit to follow.</span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span><span style="font-family: "georgia" , "times new roman" , serif;">I was pleased to read the following stories in Newsweek (<a href="http://www.newsweek.com/paralyzed-man-stands-moves-own-spinal-cord-repair-693579" target="_blank">Paralysed man surprises scientists by standing and moving on his own</a>) and Science Daily (<a href="https://www.sciencedaily.com/releases/2017/10/171026103116.htm" target="_blank">Individual with complete spinal cord injury regains voluntary motor function</a>). Very short summary; <span style="background-color: white; color: #333333;">extended activity-based training with epidural stimulation resulted in the ability for a man with a complete spinal cord injury to stand and move without stimulation six years post injury. The study was done at the University of Louisville in Kentucky and funded by CDRF (Christopher and Dana Reeve Foundation), and others through their Big Idea project.</span></span></span><br />
<span style="font-size: large;"><span style="background-color: white; color: #333333;"><span style="font-family: "georgia" , "times new roman" , serif;"></span></span></span><br />
<a name='more'></a><span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: #333333;"><span style="background-color: white;">While this is all very exciting, especially with those inexperienced with paralysis cure, the real news for many in the spinal cord injury community, had already been released numerous times by CDRF and their proxies. This big news was that, "</span></span><span style="background-color: white; color: #252525;">Even more surprisingly, all four participants experienced significant improvements in autonomic functions, including bladder, bowel and sexual function, as well as temperature regulation." (9 October 2014).</span></span></span><br />
<span style="font-size: large;"><span style="background-color: white; color: #252525;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></span><span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: white; color: #252525;">Another announcement on 31 January 2015 said that, "</span><span style="background-color: white; color: #333333;">to prove in meaningful terms that epidural spinal cord stimulation is a valid therapy leading to significant improvement of cardiovascular, respiratory, bladder, bowel and sexual function in patients..."</span></span></span><br />
<span style="font-size: large;"><span style="background-color: white; color: #333333;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></span><span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: white; color: #333333;">This is all very good news and even better news is that even though the BBS return was an unexpected return, a proper <a href="https://clinicaltrials.gov/ct2/show/NCT03036527?term=hubscher&cond=Spinal+Cord+Injuries&cntry1=NA%3AUS&rank=1" target="_blank">BBS study</a> is now part of the "stepping" study. I learned this after exchanging emails with Roderic Pettigrew the Director of the </span><span style="background-color: white; color: #333333;">National Institute of Biomedical Imaging and Bioengineering at the NIH, and his gang. His group penned an article called "</span></span><span style="background-color: white; font-family: "georgia" , "times new roman" , serif;"><a href="https://www.ncbi.nlm.nih.gov/pubmed/28113186" target="_blank">Epidural Spinal Stimulation to Improve Bladder, Bowel, and Sexual Function in Individuals With Spinal Cord Injuries: A Framework for Clinical Research</a>".</span></span><br />
<span style="font-size: large;"><span style="background-color: white; color: #333333;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></span><span style="background-color: white; color: #333333;"><span style="font-family: "georgia" , "times new roman" , serif;">So, where am I going with this story? Stay tuned to Part II of "An unexpected success story. Really? I'd like more info."</span></span></span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3760793020687154078.post-14105070869954164872017-11-04T17:51:00.001+09:002017-11-14T16:50:30.773+09:00Help Wanted! Curing paralysis together<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Hello. I'm now currently working on the next blog article, it's about peeing and other things that many of us with a screwed up spinal cord can't do so well.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I've been in touch with some interesting people who are helping me understand some facts for the next article, so please hold on about a week or so.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">In the meantime, I'm always looking for help in running this blog, in fact, I'm even considering changing it over to a podcast or even a vlog. </span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"></span><br />
<a name='more'></a>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Also, this blog used to be in five languages other than English; Italian, Spanish, Japanese, French, and Russian. I've been able to keep up the Italian, Spanish, and Japanese, with the help of great translators, but I'm always looking for more help with translation.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">If you look through this blog, you'll also see that I ain't such a great designer, so any help with this is always appreciated.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">As always, I'm really happy to hear from you especially if you have some ideas for improvements or even topics that I should be writing about.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">These are the specific things I'm looking for:</span><br />
<br />
<ul>
<li><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Translators: Italian, Spanish, French, Japanese, and Russian.</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">People with podcasting or vlog editing skills.</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Designers and others with some artistic sense.</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Writers: help with editing, or even a platform to write your own opinion piece about paralysis cure.</span></li>
</ul>
<br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">If you can help, please drop me a line at StemCells.and.Atombombs (@) gmail.com</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I'd really appreciate it, and please <a href="http://eepurl.com/c9llyL" target="_blank">don't forget to subscribe</a> and like the <a href="https://www.facebook.com/Stem-Cells-Atom-Bombs-113606492040225/" target="_blank">Facebook page</a>.</span><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-43458939673208641682017-10-22T17:53:00.003+09:002017-12-24T14:28:31.374+09:00Private vs Public money in the race to cure paralysis<html>
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<tr><td class="tr-caption" style="text-align: center;"><a href="http://stemcellsandatombombs.blogspot.jp/p/blog-page.html" target="_blank"><b><span style="font-size: large;">click HERE to enlarge</span></b></a></td></tr>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">See, I'm back for the second post since my return, and maybe today I'm going to raise some controversy.</span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Did you have a chance to read the last post and it's link to "<a href="http://stemcellsandatombombs.blogspot.jp/2011/02/tequila-shots-for-cirrhosis-research.html" target="_blank">Tequila Shots for Cirrhosis Research</a>"?</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Before I become controversial, I want to write a disclaimer...</span></span><br />
<ul>
<li><span style="font-size: large;">I appreciate all the private funds that have gone to curing paralysis.</span></li>
<li><span style="font-size: large;">I appreciate all the private efforts individuals have made to cycle, and wheel, and run, and walk to raise money to cure paralysis.</span></li>
<li><span style="font-size: large;">I thank you because for now, raising private funds is one way that we can work to cure paralysis.</span></li>
</ul>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">But, is private charity the best way to fund medical research?</span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">I often link to "<a href="http://stemcellsandatombombs.blogspot.jp/2011/02/tequila-shots-for-cirrhosis-research.html" target="_blank">Tequila Shots for Cirrhosis Research</a>". Simply put, it's the story of Rick Hansen and his goal to wheel across the world to raise money for SCI research. This was just after Terry Fox and from a young age is what made me conscious of the idea of doing something extraordinary to raise funds from private individuals for medical research. </span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"></span></span><br />
<a name='more'></a><span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">In my mind, and I think the <a href="http://www.cbc.ca/archives/entry/is-rick-hansen-man-in-motion-tour-doing-more-harm-than-good" target="_blank">CBC interview</a> in "<a href="http://stemcellsandatombombs.blogspot.jp/2011/02/tequila-shots-for-cirrhosis-research.html" target="_blank">Tequila Shots for Cirrhosis Research</a>" touches on it, is when science was privatised.</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">I don't know if I can say anymore than the comments made in the 1987 interview (see the side bar) about Hansen's ride to raise funds and the public vs private debate that ensued.</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Bless Terry Fox and Rick Hansen for their efforts, but I agree with Peter Kavanagh (CBC producer and polio survivor) when he says, "<i><span lang="EN-US">This is not
the way you deal with fundamental social problems…you do not deal with it
through stunts.</span></i><span lang="EN-US"><i>.</i>"</span></span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">I don't want to go on too long today, so I'll just leave you with some points to ponder until next week and a couple of really good articles that show the good and the bad of private philanthropy in medical research.</span></span><br />
<ul>
<li><span style="font-size: large;">In America, private donations to registered charities carry a 28% tax deduction. Looking at multi-billionaires donating millions of dollars, is it in the best interest of society that the uber rich decide what is funded? Does it make more sense to raise these funds through higher taxes on these big donors that are then disbursed by government which is responsible to the people?</span></li>
<li><span style="font-size: large;">What happens when organisations and the communities they support disagree? These organisations, even though privately funded, sometimes also receive government funds, tax breaks, and other government incentives. So are the communities they serve voiceless?</span></li>
<li><span style="font-size: large;">Even a counter point. Is government too bureaucratic to be dynamic enough and willing to take enough risks in medical research to be effective in a world where science and technology are developing so quickly?</span></li>
</ul>
<span style="font-size: large;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Maybe you can send me an email or write a few comments below.</span><br />
<h2 style="background-color: white; font-weight: 300; line-height: 1.333; margin: 0px 0px 6px;">
<ul>
<li><a href="https://www.asco.org/advocacy-policy/asco-in-action/federally-funded-research-politics-and-process-medical-research" style="font-family: georgia, "times new roman", serif;" target="_blank"><span style="font-size: large;">Federally Funded Research: The Politics and Process of Medical Research Funding</span></a></li>
<li><a href="https://mobile.nytimes.com/2014/03/16/science/billionaires-with-big-ideas-are-privatizing-american-science.html?referrer=&_r=0" style="font-family: georgia, "times new roman", serif;" target="_blank"><span style="font-size: large;">Billionaires With Big Ideas Are Privatising American Science</span></a></li>
<li><a href="https://www.lexisnexis.com/legalnewsroom/tax-law/b/taxreformandpolicy/archive/2012/10/31/charity-vs-taxes-and-the-destruction-of-the-state.aspx?Redirected=true" style="font-family: georgia, "times new roman", serif;" target="_blank"><span style="font-size: large;">Charity vs. Taxes and the Destruction of the State</span></a></li>
<li><a href="https://nonprofitquarterly.org/2013/04/02/government-funding-or-philanthropy-what-s-better-for-society/" style="font-family: georgia, "times new roman", serif;" target="_blank"><span style="font-size: large;">Government Funding or Philanthropy: What’s Better for Society?</span></a></li>
</ul>
</h2>
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-69815454641256541632017-10-14T23:06:00.000+09:002017-12-24T14:38:52.231+09:00Get the shot glasses out...I'm back<html>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo5cjGsaF0iYsyT-DJnq9A1-jN3ARI-HrY5ChxSQRW5C_IeVzUiaxKFgI1_15WoF_-jbcxwgezuIXcTTANHQZTKqhsQk_5NYfoFfm-5hUUJaMIj0UhbZkhyphenhyphena7TZUk-DoF7tF9cex0DzsFd/s1600/images.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><img border="0" data-original-height="351" data-original-width="236" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo5cjGsaF0iYsyT-DJnq9A1-jN3ARI-HrY5ChxSQRW5C_IeVzUiaxKFgI1_15WoF_-jbcxwgezuIXcTTANHQZTKqhsQk_5NYfoFfm-5hUUJaMIj0UhbZkhyphenhyphena7TZUk-DoF7tF9cex0DzsFd/s200/images.jpg" width="134" /></span></a></div>
<span style="font-family: georgia, "times new roman", serif; font-size: large;">It feels that I have announced my return so many times that people might actually doubt whether I'm really back for good. Well, I guess work will be the only way to prove that, not only to others, but to myself too.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;"> We all know that paralysis prevents movement, but I think many people in the able bodied community don't know what other things paralysis does. For one, it kills, both literally and figuratively. It kills body as well as soul with it a crushing of hope.</span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">I know; I was a victim of the "other stuff paralysis does", namely bone crunching pain. My life moved from fighting for a cure for paralysis to trying to defend my self full time from the pain it brought. I like to consider myself and strong person and I hate to feel like a victim, but I must bow to it; paralysis made me a victim of its terrifying secondary conditions and blacked out 6 years of my life.
Not to go into great detail on this first post back, I think I have the pain part under control enough to go back to the cure part, but as a hint, it wasn't mind over matter or positive thinking, it was medical technology (and of course your thoughts and prayers gave me the impetus to keep searching for an exit out of hell).</span></span><br />
<a name='more'></a><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"> </span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I started this blog in 2010 as StemCells&AtomBombs and I guess there are many now who don't know how I came up with this name. In short, I believe we can cure paralysis more quickly than they created the atom bomb. In 2009/10 stem cells were the great hope and they were relatively new. My theory was that we knew more about curing paralysis in 2009 than we knew about the atom in 1941. So if they could build an atom bomb in four years, we should easily be able to cure paralysis.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">But the building of the atom bomb was so well financed, and centrally organised, not like the chaos of cure research today. Of course the atom bomb research was so well coordinated; there was a war to win.
Well, in my mind, there still is a war to win; a war on paralysis. I hope that through my words and activities I can help in that war.
And I think my starting point is here...</span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Regardless how long I've been gone, my mind always wanders back to this 2011 posting of mine. "<a href="http://stemcellsandatombombs.blogspot.jp/2011/02/tequila-shots-for-cirrhosis-research.html" target="_blank">Tequila shots for cirrhosis research</a>". And here I'll start.</span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">I hope that you'll join me in learning how we can achieve a cure for paralysis, in fact, many diseases. I hope my old comrades in the fight are still here and those who've helped me so much, especially the translators, are still willing to give me a chance. </span></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-18751756580314358742016-07-31T21:13:00.001+09:002017-10-10T10:42:14.370+09:00Spinal Cord Injury Kills<div class="separator" style="clear: both; text-align: center;">
<a href="http://ichef.bbci.co.uk/onesport/cps/800/cpsprodpb/5BFF/production/_90515532_jt_mcnamara_body_getty.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="112" src="https://ichef.bbci.co.uk/onesport/cps/800/cpsprodpb/5BFF/production/_90515532_jt_mcnamara_body_getty.jpg" width="200" /></a></div>
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<span style="font-size: large;"><span style="line-height: 19.32px;"><span style="font-family: "georgia" , "times new roman" , serif;">Today I read a short article titled "</span></span><span style="color: #252525; font-family: "georgia" , "times new roman" , serif; letter-spacing: -0.0625rem; line-height: 2.25rem;"><a href="http://www.bbc.com/sport/horse-racing/36892365" target="_blank">JT McNamara: Jockey paralysed in 2013 Cheltenham fall dies</a>".</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Spinal cord injury kills.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">This is something that is often forgotten, and I'm not talking about at the time of injury either. People living with sci have a significantly lower life expectancy. It kills us little by little even if we survive the initial injury, and it kills us in cruel ways. </span></div>
<div style="background-color: white; color: #1d2129; line-height: 19.32px; margin-bottom: 6px;">
<span style="font-family: "georgia" , "times new roman" , serif;"><br />We put a lot of effort into pointing out how people with sci are the same as the able bodied, but without understanding how we are TOTALLY DIFFERENT from the able bodied, cure will never <span class="text_exposed_show" style="display: inline;">be given the priority it needs. </span></span></div>
<div style="background-color: white; color: #1d2129; line-height: 19.32px; margin-bottom: 6px;">
<span class="text_exposed_show" style="display: inline;"><span style="font-family: "georgia" , "times new roman" , serif;"><br />I'm not saying that we shouldn't have the same rights and opportunities than the able bodied or can't make significant contributions to society while we are disabled, but differences are also important to note so that cure has the urgency it truly deserves. </span></span></div>
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<span class="text_exposed_show" style="display: inline;"><span style="font-family: "georgia" , "times new roman" , serif;"><br />Some things to know about those of us living with sci</span></span></div>
<div style="background-color: white; color: #1d2129; line-height: 19.32px; margin-bottom: 6px;">
<span class="text_exposed_show" style="display: inline;"><span style="font-family: "georgia" , "times new roman" , serif;"><br />For every successful businessman or career woman in a chair, there are countless more unemployed. According to a 2002 study, the unemployment rate in America for those with spinal cord injury was 63%.</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">For every happy person living a carefree life in the chair, there are countless suicides. The rate of suicide in the spinal cord injured community has been evaluated as high as five times greater than those without disability.</span></div>
<span style="font-family: "georgia" , "times new roman" , serif;">
</span>
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<span style="font-family: "georgia" , "times new roman" , serif;">For every person living a long life in the chair, there are thousands who die prematurely due to complications stemming from their spinal cord injury. A 2009 study stated that life expectancies, "are still somewhat below life expectancies for those with no spinal cord injury.”</span></div>
<span style="font-family: "georgia" , "times new roman" , serif;">
</span>
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<span style="font-family: "georgia" , "times new roman" , serif;">For every person in a wheelchair enjoying greater accessibility in our communities, there are countless numbers of others who are confined to their homes due to poverty, pain, or vent dependence to whom ramps are meaningless.</span></div>
<span style="font-family: "georgia" , "times new roman" , serif;">
</span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-82663488818389685382016-06-06T20:57:00.000+09:002017-10-10T10:42:35.713+09:00What does BBS return mean? That's the question I'm going to ask!<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/_9F9_RUESS2E/SpHJCGV3ZdI/AAAAAAAAAxE/LeRY07YHodk/s800/Top-10-Worlds-Most-Shocking-Fountains-boy-urinating.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://4.bp.blogspot.com/_9F9_RUESS2E/SpHJCGV3ZdI/AAAAAAAAAxE/LeRY07YHodk/s200/Top-10-Worlds-Most-Shocking-Fountains-boy-urinating.jpg" width="200" /></a></div>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I know some people are wondering what BBS is.</span><br />
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">A new television station? A new pro basketball baseball league?</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">For many of my friends in the spinal cord injured community, this will be easily understood. It stands for Bowel, Bladder, and Sexual function, but I'm sure that for many who don't know anything about spinal cord injury, even this may not be clearly understood.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">It's never really discussed, for what some may consider obvious reasons, but it should be as well understood as the loss of walking or hand function after a spinal cord injury. So a real easy explanation is this: after a spinal cord injury most people lose control of their bowel and bladder and men can no longer get an erection. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">What does it mean to have no control over our bowels and bladders? </span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Well, other than the normal terrifying fear of an accident, it means that you don't know when your bladder is full or when you need to move your bowels. Most deal with this through the use of a catheter to empty their bladder (inserting a tube in your penis or urethra to remove the urine ever four hours or so), and a bowel programme (going to the bathroom at a certain time everyday and using either or both digital stimulation and different kinds of medicines).</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">For the loss of erection part, I think that's quite easy to understand. You simply cannot get an erection naturally either by physical stimulation (reflexogenic) or through fantasy (psychogenic). </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">As you can imagine, or know from your own experience, loss of these three functions are a terrible burden on people, including myself, who are already suffering a great deal through the loss of natural movement. In fact, it is often cited by people living with paralysis as the main things they would want back; if there was a choice that is. This is not to say that walking isn't important, and that with neuroregeneration movement, along with BBS would be dealt with naturally, but when viewed as separate issues, BBS rates high.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">So it was with great interest that I read <a href="https://www.nih.gov/news-events/news-releases/paralyzed-men-move-legs-new-non-invasive-spinal-cord-stimulation" target="_blank">an article</a> about a "breakthrough" with transcutaneous electrical stimulation (this is electrical stimulation of the spinal cord by attaching electrodes to a patient's back--as opposed to epidural stimulation which requires surgical implants of electrodes). I put breakthrough in quotations simply because the press o</span><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">ften reports on "breakthroughs" that are either not actually recent, or not as remarkable as what is reported.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I do find this article interesting. While the movement part
isn't where most of us would like to see it at this point, the article does
report, "<i>The other thing to note is that this sort of training yields
measurable and important benefits for paralysed patients including improved
overall health, mood and bladder and erectile function.</i>"</span><o:p></o:p></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I think this is very important, but the problem I have is that while BBS return is often reported as "measurable" as in this article, or even more "a return of BBS", no one, not even in the scientific papers I have read, states the measurement or what "return" means.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I don't consider this to be the fault of the scientists, who I think have an intellectual understanding of the massive importance of BBS return, but who may not understand the HOPE that is stirred up when these things are reported. Those who I've spoken to come away with any range of definitions from minor to major, to even peeing your name in the snow.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Therefore, I will write to professor Reggie Edgerton from UCLA who ran this study and ask that he share the measurable part of the BBS return with us. I'm not writing him to trap him because I don't believe it's true, I'm writing to him in the hope that we can explain the current state of BBS return using his non-invasive therapy.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">My email follows:</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">____________________________</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Dear Professor Reggie Edgerton,<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My name is Dennis Tesolat. I live in Osaka, Japan, am a
paraplegic from a intradural avm hemorrhage, and I write a blog about paralysis
cure. Actually I should restate that last part. I wrote a blog from 2010 to
2015 and took a year off in order to deal with a lot of chronic pain. I’m
starting back now, and the first thing that came across my desk was <a href="http://www.newstalk.com/EXCLUSIVE-Mark-Pollock-stands-for-the-first-time-since-paralysis">an
article</a> from NewsTalk.com from 21 May 2016.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><o:p></o:p></span><span style="font-family: "arial" , "helvetica" , sans-serif;">While I understand the “walking part” is still in its
infancy (also having read other articles on the work you did with five other
patients), I was very interested in what was reported as “measurable” return of
bladder and sexual function (I’m also wondering if bowel should be included in
this even though it wasn’t in the news report).<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We’ve seen the same reports coming from the Reeve Foundation
using epidural stimulation, but I find that the problem is that no one is
telling us what “return” means. At the best this causes interest confusion, and
at the worst, it may foster false hope if not properly reported in the press.
And please understand, I’m saying that <u>how things are reported in the press
is the problem</u> as you cannot control what the press reports or even
understands.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This is why I’m writing to you directly, and also hope to
publish your answer (oddly enough I still have a good readership even though I’ve
been away a year). <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I will ask you some simple questions, and hope that you can
answer me in as much detail as you can give. I understand that when trials are
being done “half reporting” of findings is not a good idea, but since this is
already in the news, I feel that you probably can add much more information than
what the press is willing to publish.<o:p></o:p></span></div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></b></div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;">So my question is
this: <o:p></o:p></span></b></div>
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<li><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">·</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-stretch: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">What return of BBS was found?</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">·</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-stretch: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">How was it measured?</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">·</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-stretch: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">What are those scores?</span></li>
</ul>
<!--[if !supportLists]--><br />
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></b></div>
<div class="MsoNormal">
<b><span style="font-family: "arial" , "helvetica" , sans-serif;">In even simpler
terms, people want to know these things…<o:p></o:p></span></b></div>
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<ul>
<li><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">·</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-stretch: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Do the patients know when they need to urinate
and or defecate? How strong is the feeling and how accurate?</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">·</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-stretch: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Do they still need to catheter themselves, or
use things like digital stimulation for a bowel movement?</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">·</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-stretch: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">About sexual function; are drugs needed to
achieve an erection; is there feeling in the penis; how about psychogenic
erections; can the patient achieve orgasm?</span></li>
</ul>
<!--[if !supportLists]--><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I excuse myself for writing to you completely out of the
blue, but do hope that you can help me help my readers understand this
especially since the transcutaneous therapy is non invasive and could be a
tremendous help to people in regards to the return of bowel, bladder, and
sexual function in the very near future.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Thank you for your time in reading my email and I hope to
hear back from you.<o:p></o:p></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-81160297642284218492016-05-05T21:16:00.000+09:002017-10-10T10:42:35.699+09:00Time to get off my butt! Literally, I hope.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.clker.com/cliparts/m/r/r/S/S/2/elephant-butt-md.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://www.clker.com/cliparts/m/r/r/S/S/2/elephant-butt-md.png" height="190" width="200" /></a></div>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">It's been over a year since I took some time off to try to get control of my pain as it was getting in the way of any kind of cure work. </span><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Well, another operation and three weeks in pain management rehab and I’m back. I haven’t yet beat the pain, but I guess if I don't get off my butt now, I'll never get off my butt in the future. I have the same premise now that I had when I first started and it's that if we, those living with paralysis don't get involved, we'll never cure chronic spinal cord injury.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">So, here I go again...</span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Sadly, after such a long absence, there are now many new people living with paralysis that I haven't yet had the chance to meet, so I feel that I should start with a brief introduction.</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">My name is Dennis Tesolat and on 12 August 2009 I suffered a <a href="https://www.msdmanuals.com/en-jp/professional/neurologic-disorders/spinal-cord-disorders/spinal-subdural-or-epidural-hematoma" target="_blank">spinal subdural hematoma</a> caused by an <a href="http://www.mayoclinic.org/diseases-conditions/spinal-arteriovenous-malformations/basics/definition/con-20036382" target="_blank">AVM</a>. An easy explanation (because it’s quite rare); I had a bleed in my spinal cord and the haematoma pressured the cord and left me a paraplegic. I started this blog while I was still in rehab and almost immediately I started meeting many other cure activists from all around the world who I worked with regularly and were an enormous help and encouragement to me.</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">I never intended to set up my blog as a “<i>Dennis speaks</i>” type thing because who really cares what Dennis says and, "W<i>ho in the hell is Dennis to speak anyways?</i>" My goal has always been to involve myself in getting others involved by organising people to improve transparency and information exchange in the cure process and building urgency for cure. These are the areas that I think I can best contribute to.</span></span><br />
<br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span><span style="font-family: "georgia" , "times new roman" , serif;">While I wasn’t always successful in my campaigns, I was able to include people all over the world, and I know from many sources that we did make an impact. Have a look through the blog's archive for some information on the campaigns I was involved in. </span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">As always, I'm relatively hopeful about the advances in some of the science and<a href="http://endparalysis.org/spinal-cord-research-progress-towards-recovery" target="_blank"> this is a good summary</a>, but I know that with the voices of those of us living without paralysis, a cure will continue to evade us. Oddly enough, I've never considered the science to be the main obstacle.</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">So what do I think are the main obstacles?</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">I think, and I know that many concur, it is a failure of government to not only fund science, but to lead the process. In short, we are missing a road map to cure, and the only group around that can bring all the players and pieces together is government. While governments do provide a lot of the important funding, they have basically outsourced their responsibility to massive foundations, universities, and the private sector which have no accountability to the people living with paralysis. Other smaller groups, with often wonderful intentions, are then left to scramble for the remaining government funds and compete for private donations.</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">I see a lot more cooperation and collaboration amongst scientists than I did six years ago when I started, but COORDINATION is what will bring cure, and that I believe is the role of government acting on our behalf.</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">So in concrete terms what role would I like to play? I’m not a scientist, but I think I am good at analysing logistical and economic issues, and bringing people together to affect change. I would like my role to be in investigating what is going on in the world of cure and why it continues to evade us. I want to gather up all our voices in order to get the answers and information we need. </span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">These are the current therapies that I am interested in getting more information on.</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></span>
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<ul>
<li><span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><a href="http://www.reevebigidea.org/" target="_blank">Epidural stimulation</a> and specifically the current trials being run by the Christopher and Dana Reeve Foundation (CDRF). I love the name of this programme, “The Big Idea”, and I love the feeling they are trying to create about their work. This is the passion that I think is often missing from CDRF. While I’m not convinced about epidural stimulation, I am always willing to be convinced. Specifically, I am interested in getting more information in your hands about some of their important claims about bladder, bowel, and sexual function.</span></span></li>
<li><span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><a href="https://spinalcordresearchandadvocacy.wordpress.com/?s=Jerry+Silver" target="_blank">Chondroitinase</a> (aka ch'ase) and the work being done by Spinal Research in the UK and the Jerry Silver lab. Personally, I think that the work around chondroitinase is the best tested and worked with avenue to cure. It’s been played around with for a couple of decades. What we need to know now is what the plan is. Something this important requires more transparency so that we know what WE can do to move things along.</span></span></li>
<li><span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;">In 2014 the papers blared with<a href="https://spinalcordresearchandadvocacy.wordpress.com/2014/10/20/prof-geoff-raisman-of-university-college-london-paralyzed-patient-walks-again-after-cell-transplant/" target="_blank"> the story of a paralysed Polish man</a> who had a positive outcome after being treated with olfactory ensheathing cells in a research carried out by professor Geoffrey Raisman in the UK. Since this time, we’ve heard very little about what the plans are for the future. 2014 was two years ago and seeing where this exciting research and further clinical trials going is a must for our community.</span></span></li>
</ul>
<br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Also, as before, I want to continue researching how funding works and what we can do to; increase funding, make funding more goal driven, and make sure funding isn’t wasted. </span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Many years ago in rather nasty attack from Shawn Friedkin, acting a surrogate for the Reeve Foundation, I was told by him that, “<i>quite frankly we don’t need accountants to find cures…we need more scientists and more funding.</i>” Me, I don’t think that just money and more scientists will lead to cure and I wish to explore how we can <b>improve</b> funding for spinal cord injury cure. If funding isn't used wisely, it will be lost.</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Most importantly I want to investigate what I consider to be the political solutions to cure and how we can organise ourselves to have the most impact.</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">I think that the name of my blog, StemCells&AtomBombs sums up my views about this part quite nicely.</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">If you want to build an atom bomb, or put a man on the moon, government is the only agency with the money and coordinating power to do it. They didn't make the bomb by throwing around money to individual scientists and foundations in the hope that a bomb would be made. No, they centralized both the resources and the science and made it accountable to leadership.</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">For that we need leadership and that’s where you and me come in. We need to raise our voices to get this leadership. I’ve said it a thousand times; if you don’t have a lot of money, then you need a lot of people, and my goal is to get us together to demand the necessary leadership, and to demand that money and work that is currently being done is accountable to us. Only us, the people that live the nightmare of paralysis can give it the urgency it needs to make cure a priority.</span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">______________</span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Are there other areas of research that you’d like more information about? Are there other pressing things that you think we need to know? I’m open to any decent project and more collaboration with others.</span></span><br />
<span style="font-size: large;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">That's a pretty big list and I what I hope for most is that I don’t fall away again due to pain and that I can be there at the end of the cure finish line with you.</span></span><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-79213796219106506682015-10-25T13:29:00.000+09:002017-10-10T10:42:35.692+09:00Help us win 50K EURO for SCI cure<div id="fb-root">
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<span lang="EN-CA"><span style="font-family: Georgia, Times New Roman, serif;">Just in case you trust me, I'll cut to the chase. </span></span><span style="font-family: Georgia, 'Times New Roman', serif;"> </span><span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><a href="https://www.facebook.com/600877526710221/videos/vb.600877526710221/694032397394733/?type=2&theater" style="font-family: Georgia, 'Times New Roman', serif;" target="_blank">Like this video</a> </span><span style="font-family: Georgia, 'Times New Roman', serif;">and you'll help us win 50,000 euro to cure chronic spinal cord injury. </span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">For those who want to know more, here it is.</span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7YUrxwReTOFY1sBMSViU4THQPIUsATI37jTJFqN3iK6q_e17tOw_beWd8iT59YXWojy1ubkvj5oVnlz4-dT7SPU7ZBTZ6wkd0w0PAMWYCKqdpWkvuWuEP8mjN6uV2VGhbxCP77dNligbW/s1600/corinne.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7YUrxwReTOFY1sBMSViU4THQPIUsATI37jTJFqN3iK6q_e17tOw_beWd8iT59YXWojy1ubkvj5oVnlz4-dT7SPU7ZBTZ6wkd0w0PAMWYCKqdpWkvuWuEP8mjN6uV2VGhbxCP77dNligbW/s640/corinne.jpg" width="241" /></a><span lang="EN-CA"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span><br />
<span lang="EN-CA"><span style="font-family: Georgia, Times New Roman, serif;">The <a href="http://www.endparalysis.org/" target="_blank">EndParalysis Foundation</a>,
run by Corinne Jeanmaire from the Netherlands, has entered into a super
exciting competition with a first prize of 50,000 euros.</span></span></div>
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<span lang="EN-CA"><span style="font-family: Georgia, Times New Roman, serif;">The EndParalysis Foundation works solely to
fund research aimed at <b>curing chronic spinal cord injury</b>. If they win, this
50,000 euro will go directly towards funding the UK's Spinal Research
'Chondroitinase' project. It is super exciting research which is focussed on
getting people out of wheelchairs.</span></span></div>
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<span lang="EN-CA"><span style="font-family: Georgia, Times New Roman, serif;">So, to win, they need YOUR votes. And to vote
all you need to do is <a href="https://www.facebook.com/600877526710221/videos/vb.600877526710221/694032397394733/?type=2&theater" target="_blank"><span style="font-size: large;">like this video</span></a> on FB. To vote, you must like the video, NOT the page. <b>ONE LIKE = ONE VOTE</b></span></span></div>
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<span lang="EN-CA"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span></div>
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<span lang="EN-CA"><span style="font-family: Georgia, Times New Roman, serif;">The video is in Dutch, but you can also watch it with English subtitles below, but please be aware that you need to like the Dutch video on Facebook to vote.</span></span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif;">Please share </span><span style="font-family: Georgia, 'Times New Roman', serif;">this information with your friends </span><span style="font-family: Georgia, 'Times New Roman', serif;">and encourage
your contacts to like the video. </span><br />
<br />
<span style="color: red; font-family: Georgia, 'Times New Roman', serif;">Don't use the facebook share to post to your timeline as people must go to the link and like it (not like your share on your timeline).</span></div>
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<span lang="EN-CA"><span style="font-family: Georgia, Times New Roman, serif;">Many thanks for helping us!</span></span><br />
<span lang="EN-CA"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span>
<span lang="EN-CA"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span></div>
<iframe allowfullscreen="" frameborder="0" height="281" mozallowfullscreen="" src="https://player.vimeo.com/video/139233919" webkitallowfullscreen="" width="500"></iframe> <br />
<a href="https://vimeo.com/139233919">EndParalysis</a> from <a href="https://vimeo.com/endparalysis">EndParalysis foundation</a> on <a href="https://vimeo.com/">Vimeo</a>.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-52191818101520436222015-04-26T10:43:00.000+09:002017-10-10T10:42:35.596+09:00Send FAX & email to Minnesota to support money for spinal injury cure<span style="font-family: Georgia, Times New Roman, serif;">I know I said that I wouldn't be back until 1 October, but I received a special request from cure activists in Minnesota asking for our help, so here I am. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And now here you are too, and I'm going to make the same special request to you and I need you to spend literally just a few minutes to make sure that Minnesota passes $8 million dollars for cure research for spinal cord injury and traumatic brain injury. They've been at this five years and need your support for them to win this year.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">You can do this by following the link below to send an email (to Rep. Knoblach, the chair of the Ways and Means Committee) & a special fax (online & free) to the governor to ask for their support in make sure this research money passes.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">There is some more information below and you can go to both <a href="http://www.gusu4cure.org/">www.gusu4cure.org</a> (these are our Minnesotan friends who have been working so long and hard on this) and read this story in the <a href="http://www.startribune.com/politics/statelocal/300711441.html" target="_blank">Minnesota Star Tribune</a></span><span style="font-family: Georgia, 'Times New Roman', serif;">, but we need you to send your fax and email immediately. Only one week left so please do this now.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span><span style="color: red; font-family: Georgia, Times New Roman, serif; font-size: large;"><b>Campaign is now finished. Thank you.</b></span><br />
<span style="font-family: Georgia, Times New Roman, serif;">______________________________________</span><br />
<div style="background: rgb(255, 255, 255); border: 0px; color: #4c4c4c; font-size: 16px; line-height: 24px; outline: 0px; padding: 0px 0px 17px; vertical-align: baseline;">
<span style="background-attachment: initial; background-clip: initial; background-color: transparent; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border-image-outset: initial; border-image-repeat: initial; border-image-slice: initial; border-image-source: initial; border-image-width: initial; border: 0px; color: #1c1c1c; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;"><b>MN Spinal Cord & Brain Injury Research Grant Act </b>(MN is the way Minnesotans say Minnesota)</span></span></div>
<div style="background: rgb(255, 255, 255); border: 0px; color: #4c4c4c; font-size: 16px; line-height: 24px; outline: 0px; padding: 0px 0px 17px; vertical-align: baseline;">
<span style="background: transparent; border: 0px; color: #1c1c1c; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;">We are requesting an $8 million dollar annual appropriation from the state budget as an economic development plan to fund innovative research towards deliverable therapies for the functional improvements of those living with Spinal Cord Injury (SCI) and Traumatic Brian Injury (TBI). This effort is inspired by the recent and significant advances in the field, along with the challenges faced by the 118,000 Minnesotans living with these disabilities.</span></span></div>
<div style="background: rgb(255, 255, 255); border: 0px; color: #4c4c4c; font-size: 16px; line-height: 24px; outline: 0px; padding: 0px 0px 17px; vertical-align: baseline;">
<span style="background: transparent; border: 0px; color: #1c1c1c; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;">WHY?</span></span></div>
<div style="background: rgb(255, 255, 255); border: 0px; color: #4c4c4c; font-size: 16px; line-height: 24px; outline: 0px; padding: 0px 0px 17px; vertical-align: baseline;">
<span style="background: transparent; border: 0px; color: #1c1c1c; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;">•We believe that current market forces are not sufficient to respond to the recent research breakthroughs.</span></span></div>
<div style="background: rgb(255, 255, 255); border: 0px; color: #4c4c4c; font-size: 16px; line-height: 24px; outline: 0px; padding: 0px 0px 17px; vertical-align: baseline;">
<span style="background: transparent; border: 0px; color: #1c1c1c; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;">•The NIH funds only 10% of all applications. As the major source of funding for medical innovation this leaves many excellent inquiries unfunded</span></span></div>
<div style="background: rgb(255, 255, 255); border: 0px; color: #4c4c4c; font-size: 16px; line-height: 24px; outline: 0px; padding: 0px 0px 17px; vertical-align: baseline;">
<span style="background: transparent; border: 0px; color: #1c1c1c; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;">•Research spending in this field has primarily been for continuing care and rehab, not for strategies to deliver functional improvement. Considering the enormous costs of care for those living with SCI/TBI, these priorities are out of alignment.</span></span></div>
<div style="background: rgb(255, 255, 255); border: 0px; color: #4c4c4c; font-size: 16px; line-height: 24px; outline: 0px; padding: 0px 0px 17px; vertical-align: baseline;">
<span style="background: transparent; border: 0px; color: #1c1c1c; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;">•Lifetime costs of care for individuals range from $1.5 to $4.6 million</span></span></div>
<div style="background: rgb(255, 255, 255); border: 0px; color: #4c4c4c; font-size: 16px; line-height: 24px; outline: 0px; padding: 0px 0px 17px; vertical-align: baseline;">
<span style="background: transparent; border: 0px; color: #1c1c1c; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;">•Annual costs of care for SCI in MN is a little over $520 million while the exact figures for TBI are yet unclear.</span></span></div>
<div style="background: rgb(255, 255, 255); border: 0px; color: #4c4c4c; font-size: 16px; line-height: 24px; outline: 0px; padding: 0px 0px 17px; vertical-align: baseline;">
<span style="background: transparent; border: 0px; color: #1c1c1c; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;">•Treatments involving devices and regeneration for SCI/TBI are emerging from the states where it is being funded. Why not here?</span></span></div>
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<span style="background: transparent; border: 0px; color: #1c1c1c; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;"><b>WHAT’S THE RETURN ON INVESTMENT?</b></span></span></div>
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<span style="background: transparent; border: 0px; color: #1c1c1c; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;">• This investment would create jobs and attract highly trained neuroscientists and researchers to Minnesota and into the field of neuroregeneration and novel medical devices.</span></span></div>
<div style="background: rgb(255, 255, 255); border: 0px; color: #4c4c4c; font-size: 16px; line-height: 24px; outline: 0px; padding: 0px 0px 17px; vertical-align: baseline;">
<span style="background: transparent; border: 0px; color: #1c1c1c; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;">• There is a strong correlation for state funded programs to attract increased NIH funds, given the 10% award ratio listed above. For example, California generated $15 million in state funds, which leveraged $86 million in NIH federal funds, over several years.</span></span></div>
<div style="background: rgb(255, 255, 255); border: 0px; color: #4c4c4c; font-size: 16px; line-height: 24px; outline: 0px; padding: 0px 0px 17px; vertical-align: baseline;">
<span style="background: transparent; border: 0px; color: #1c1c1c; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;">• The grant program would push research forward by providing seed money for therapeutic innovations, novel medical devices and needed funds to drive existing lab research to clinical trial and onto industry for treatments, resulting in bio-tech spin-offs.</span></span></div>
<div style="background: rgb(255, 255, 255); border: 0px; color: #4c4c4c; font-size: 16px; line-height: 24px; outline: 0px; padding: 0px 0px 17px; vertical-align: baseline;">
<span style="background: transparent; border: 0px; color: #1c1c1c; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;">• By moving the research to clinic, MN would see an enormous reduction in the costs of care for those afflicted with injury. Any improvement to the consequences of these injuries, or recovery of breathing/bowel/bladder/sexual function, mobility, memory and cognition would have a significant impact upon quality of life and employment.</span></span></div>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3760793020687154078.post-54871844585989988292015-04-19T12:43:00.001+09:002017-10-10T10:42:35.607+09:00Yo Dennis! Whatever happened to fighting for a cure?<p dir="ltr">Hello. It's been a long time. </p>
<p dir="ltr">No, I haven't forgotten about you or paralysis cure, but like many of you, I continue to be one of the many victims of paralysis.</p>
<p dir="ltr">I continue to get many emails asking what I'm up to these days. I know these emails are also small reminders that I haven't  been doing anything lately. The title of this post will quickly be recognised by one one of my cure-comrades-in-arms as she wrote me this one line email a few weeks back.</p>
<p dir="ltr">I must say that I am grateful for still being remembered. I still get regular likes on StemCells&AtomBomb's Facebook page and messages to my blogs. This does give me pleasure in knowing that I at least had some impact and offered hope. These messages also get me down because it reminds me that I'm not doing anything at the moment and therefore, according to my own judgement, I am part of the problem.</p>
<p dir="ltr">I'd like today's post to be both an apology for my failure to keep up the fight for paralysis cure and an explanation about my future commitment.</p>
<p dir="ltr">One. No, I have not given up on the idea of a cure for paralysis.</p>
<p dir="ltr">Two. I still believe that non-scientist members of the paralysis community can play an important role in a cure for paralysis.</p>
<p dir="ltr">So, where in the heck have I been? You've probably heard me say that "paralysis cure is not just going to fall out of the sky and bite us on our collective arses", so why aren't I doing anything about about it like I once demanded we all did? </p>
<p dir="ltr">The answer is one small four-letter word that doesn't start with F.</p>
<p dir="ltr">PAIN!</p>
<p dir="ltr">Before paralysis (BP) I had basically two jobs. I'd say one full time job as a teacher and a ¾ job at the union. I sometimes wonder How I did it. After becoming paralyzed (AP) I figured that I'd quit teaching (too many schedules when You're a teacher) and just concentrate on the union and cure.</p>
<p dir="ltr">It worked out for some time, and then the pain got terrible after having an operation for syringomyellia. Since that time it's been downhill to the point where I can't do both cure and union because now PAIN has become the other full time job.<br>
I don't even know How to describe it other than to say it has slowed me down terribly. Three hours to get out of bed and then another few hours to use the facilities and get ready. I feel like I'm in slow motion. I still can handle two jobs, PAIN and union, but a third, CURE is a little too much for me at the moment.<br>
Sure I could write blog posts, but seeing that my blog was never just a "Dennis speaking to the world" type blog and was rather about campaigning and motivating people, I don't see the point in writing. I Actually have two campaigns almost ready, but I can't offer the physical commitment so I've  put them on hold, and feel really badly about not doing that.<br>
Feeling bad about not doing cure work has gotten to the point that I won't even read about it. You'll notice that I haven't been on CareCure for a long time. In Dennis' mind there is NO sense just reading and knowing things, you must DO something about it.</p>
<p dir="ltr">So, since I hate not doing cure work, I'm going to make you all a promise. This way here I'll have a target and won't feel that I've just let people down, and also won't feel like running away from everything cure related in the meantime. </p>
<p dir="ltr">My promise. </p>
<p dir="ltr">I'll be back on 1 October one way or another. The first way is that I'm going to be much more aggressive in dealing with trying to fix this pain. I'm on a trail to the pain and think I may know what it it is. So if my current doctors don't listen, I'll be going to a different doctor<br>
Secondly, if I don't beat this pain, then Ill need need a partner for my blog campaigns. Interested? Keep me in mind.<br>
Once again, I thank you for your encouraging messages and I apologise to everyone of you that I've  let down.<br>
It's good to set a target and slowly reinvolve myself. See you 1 October and if you have any ideas for new campaigns, let me know.</p>
<p dir="ltr">Thanks.</p>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-91849983982944096952014-10-21T21:00:00.003+09:002017-10-10T10:42:35.777+09:00Give SCI BC a new slogan to replace, "It's not about cure. It's about quality of life."<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9JbGqXyY6nQb3VL33U1DY1QW5jhQQXJIAOechqQvRZMOWhQevzBd8So6eoLH2TjEkWFfW65_G1lsKVwaxtmS5_UZDgAkR4vQiDuIzmpLhMbV7qjp1NUlNz0N-hLp33Ic3Z1gvfOygEmR-/s1600/scibc.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Georgia, Times New Roman, serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9JbGqXyY6nQb3VL33U1DY1QW5jhQQXJIAOechqQvRZMOWhQevzBd8So6eoLH2TjEkWFfW65_G1lsKVwaxtmS5_UZDgAkR4vQiDuIzmpLhMbV7qjp1NUlNz0N-hLp33Ic3Z1gvfOygEmR-/s1600/scibc.png" height="310" width="400" /></span></a></div>
<span style="font-family: Georgia, Times New Roman, serif;">Recently, I've been getting a fair number of emails and comments from of all of you to help SCI BC think about a slogan they used on a poster (you can see it circled in red to your left) to replace, "<a href="http://stemcellsandatombombs.blogspot.jp/2014/10/what-does-not-about-cure-it-about.html" target="_blank">It's not about cure. It's about quality of life.</a>" I was able to have a <a href="http://stemcellsandatombombs.blogspot.jp/2014/10/not-about-cure-it-about-quality-of-life.html" target="_blank">good talk with the CEO</a> of this organisation and he realises that this slogan needs replacing as it could give the idea that SCI BC isn't in support of regenerative therapies.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Of course SCI BC isn't obligated to use our ideas for a new slogan, but I want to let them know that people aren't just interested in complaining, but interested in working together to make sure that problems are rectified not only talked about.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">So I'm putting the list of ideas that I received below, unedited except I haven't included any that disparage the importance of care, quality of life, or cure. Now, I'd like to know your top ten from the list.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Hope you spend a few minutes to vote. The list is below and you can pick your top 10 here.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">
<iframe frameborder="0" height="1000" marginheight="0" marginwidth="0" src="https://docs.google.com/forms/d/1IxqhoJ6LPcRuf6W_K9aqrPxpdavVKNmLjLFAhn2ukh4/viewform?embedded=true" width="600">Loading...</iframe></span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3760793020687154078.post-90399179012596690292014-10-18T19:01:00.001+09:002017-10-10T10:42:35.771+09:00Want to know what it's like to live with a spinal cord injury?<p dir="ltr">If you don't have a spinal cord injury or other form of paralysis, you can't even imagine what it's like. </p>
<p dir="ltr">You see the loss of hands, arms, and feet, but that's just the tip of the iceberg. </p>
<p dir="ltr">Well, now you can hear first hand from those living with paralysis what it's like to live in their bodies.</p>
<p dir="ltr">This short, wonderfully produced video will help you understand paralysis in a way you never have.</p>
<p dir="ltr">Thanks to Minnesota Matthew for this very informative video.</p>
<p dir="ltr">Go to www.gusu2cure.org to watch.</p>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3760793020687154078.post-17417615527956324542014-10-10T11:45:00.001+09:002017-10-10T10:42:35.504+09:00"It's not about cure. It's about quality of life." PART II<p dir="ltr">First of all I would like to thank Mr. McBride, executive director of Spinal Cord Injury British Columbia (SCI BC) for his thoughtful and speedy response to my email regarding his organisation's commitment to a cure for SCI.</p>
<p dir="ltr">The concern was raised after one of their posters explaining many of the challenges of paralysis used the slogan, "It's not about cure. It's about quality of life." sparked some controversy.</p>
<p dir="ltr">Of course we didn't get a response saying that SCI BC would now focus solely on cure, and that was never expected. SCI BC plays an important role in the SCI community by improving accessibility to housing, jobs, and the community as a whole and as a divergent membership organisation reflects the opinions of many who may or may not be cure oriented.</p>
<p dir="ltr">What we wanted to make sure was that they were; one, not anti cure; two, not flobbing cure off as some unrealistic goal; and three, they were going to continue putting a message out to the community which could easily be misconstrued as lowering the importance of cure. I think we got a Good response on all three points.</p>
<p dir="ltr">Are they anti-cure? No. In Mr. McBride's own words, "we did not intend to diminish the long-term priority of someday finding a cure for SCI. As a cellular neurobiologist who spent many years researching neuroprotection and neural repair after SCI, I am a strong believer in ongoing investment into the discovery science that is necessary for future treatment options and in the subsequent translational research that will be necessary to move those discoveries into clinical practice."</p>
<p dir="ltr">Do they think cure is unnecessary? No.<br>
"We absolutely acknowledge that having access to a cure would increase the potential for people with SCI to achieve the quality of life they desire by reducing the barriers and challenges they face."</p>
<p dir="ltr">How about the continued use of this slogan. Again, I'm happy with the response. "Elaborating on the statement in question, we will be changing it so that is not as readily interpreted as negating cure as a priority. It was never our intention to imply this."</p>
<p dir="ltr">There are some areas where I think a more cure positive approach could be taken. I think like many SCI community organisations they understand our community's desire for cure but also don't want to spread false hope or have priest fail to concentrate on the here and now while they wait for cure. I personally do not think that the gulf between quality of life now so we can get to cure in the future needs to be so vast. I think the two are complimentary.</p>
<p dir="ltr">Since SCI BC is looking to change their slogan, Maybe we could give some of our own ideas which also reflects their organisations goals to achieve both quality of life and cure.</p>
<p dir="ltr">Have a suggestion, please leave it in the comment box below or send an email to StemCells.and.AtomBombs@gmail.com.</p>
<p dir="ltr">PS. As always, I'm having a lot of pain which makes it difficult to get motivated to write, but as always, when I do write and get some movement on a project, I feel a while lot better. I'll have to remember this.</p>
<p dir="ltr">Response from Mr. McBride </p>
<p dir="ltr">Hello Denis,<br>
Thank you for taking the time to connect with me about the poster in question. We here at SCI BC are aware of the reaction it has generated – both positive and negative. In fact, it probably wins the prize for the highest volume of engagement we have had from any post. I am happy to clarify our position on the issue of cure, and although I am aware that my response will be published on your blog, I will nevertheless be frank and honest in my reply.</p>
<p dir="ltr">I will also confirm that I am very aware of your blog and the global movement you have so successfully created. I have watched with particular interest your communications with the Rick Hansen Foundation and Institute over the recent past. The voice of one can be strong but the voice of many can be a powerful thing.</p>
<p dir="ltr">With specific respect to the poster we posted recently, I will admit that we were somewhat hesitant about the phrase in question - "It's not about a cure. It's about quality of life." Let me interject now that we did not intend to diminish the long-term priority of someday finding a cure for SCI. As a cellular neurobiologist who spent many years researching neuroprotection and neural repair after SCI, I am a strong believer in ongoing investment into the discovery science that is necessary for future treatment options and in the subsequent translational research that will be necessary to move those discoveries into clinical practice. However, having been involved with SCI research for over 22 years, I am aware of the (frustratingly) slow pace of discovery and it is why I am passionate about resetting the balance of investment in both the types of research that are being conducted and between research and the invaluable community services that will allow people with SCI to maximize their potential and quality of life today.</p>
<p dir="ltr">Getting back to the poster, it was actually created for a very specific audience at a non-disability-related event we were featured at. We created the poster to highlight many of the everyday challenges faced by people with SCI, which you affirm in your email and of which the general public is mostly ignorant. We used the wording about cure to help differentiate what SCI BC does from other SCI-related organizations with which we share a backyard. Which is to say, we stated it that way not to diminish the importance of finding a cure, but rather to highlight that there is a lot to be done today that can have an immediate positive impact and what SCI BC does to try and foster that.</p>
<p dir="ltr">We were concerned the wording we chose about the cure might be misinterpreted but we put it out there to see what kind of response it might yield. This wasn’t meant as a deliberate provocation. We just thought we would test it and see what the response was before we changed the wording, which we will be doing soon.</p>
<p dir="ltr">As mentioned above, we have been pleasantly surprised by the volume of response we have had to the poster. We welcome all forms of constructive feedback and think engagement of this kind is healthy. We often don’t hear about positive reactions to what we post, but we have had an overwhelmingly positive response to the poster. That said, we have also received a lot of negative responses to the cure statement, and we totally understand why. It is good to have it validated.</p>
<p dir="ltr">Elaborating on the statement in question, we will be changing it so that is not as readily interpreted as negating cure as a priority. It was never our intention to imply this. However, we think it is important to reflect the fact that people with SCI have broad ranges of priorities and that not all feel they need to be cured to have a quality of life – that one doesn’t need to be cured to be whole. We know this based on what so many of our members tell us and from some very interesting research that affirms it.</p>
<p dir="ltr">That said, we absolutely acknowledge that having access to a cure would increase the potential for people with SCI to achieve the quality of life they desire by reducing the barriers and challenges they face. However, as this may be a very long-term proposition, we need to respond to the those who are not engaging in their communities or working to maximize their potentials because they are waiting for a cure they believe will be around the corner.</p>
<p dir="ltr">Through our 57 years of service delivery and the reports we receive from the health practitioners we engage with, we know that too many people with SCI are not participating in rehab or community services because they think these things are unnecessary as a cure is what they really need to move forward and that it must be coming soon. Unfortunately, researchers and mainstream media alike have perpetuated the false hope of an imminent cure. Through my research background and the connections with the research community that I maintain, I think it is clear that there aren’t any sure-fire candidates for a cure coming anytime soon. One never knows, of course, but I think the probability is low. This is why I advocate for ongoing basic science to better understand the complexity of spinal cord injury and why I advocate for research into what might not be considered cure-based (such as rehab strategies, mitigating or preventing secondary complications, and assistive technologies, all of which can yield meaningful, near-term benefits for people with SCI). It is also why I advocate for greater investment in community services.</p>
<p dir="ltr">I know I may be opening myself up to a mix of feedback, but more on my perspectives on resetting the balances of research and community service can be found in my blog posts and in SCI BC’s The Spin magazine. Here are a couple of links to these entries:</p>
<p dir="ltr">·         Investing research vs Community: http://sci-bc.ca/sci-research/investing-research-vs-community/</p>
<p dir="ltr">·         Snotty Spine: A good investment? http://sci-bc.ca/news/snotty-spine-good-investment/</p>
<p dir="ltr">·         New research restores voluntary movement after complete SCI: http://sci-bc.ca/sci-research/new-research-restores-voluntary-movement-after-complete-sci/</p>
<p dir="ltr">·         The Spin Magazine: http://sci-bc.ca/stories/spin-magazine/</p>
<p dir="ltr">I know this is a rather verbose response, but I hope you and the Stem Cells and Atom Bombs community will appreciate that SCI BC does indeed think find a cure for SCI is a priority. I also hope that, as you mentioned in your email, it is recognized that there are many challenges faced by people with SCI that we need to address today and that SCI BC has a focus on many of them, and that it would be a great disservice to people with SCI if all of the money was diverted to efforts towards a cure. Too many would suffer unnecessarily and/or miss out on too much waiting for it to be realised.</p>
<p dir="ltr">We feel very strongly that we must reflect the views of our members who tell us that they know a cure may not be available in their lifetime and that they want us to promote and facilitate changes that will enhance their lives today, such as greater access to accessible housing, accessible transportation, funding to support all aspects of daily living, information on and access to accessible travel and recreation, reduced secondary health complications, and equal opportunities to participate in our communities. Through our Peer Support and Information Services, they appreciate knowing what is possible and how to try and achieve it.</p>
<p dir="ltr">With limited resources, time and expertise, we must achieve a balance between perusing the ultimate,  long-term goal of finding a cure for SCI with what is needed in the immediate and near-term to maximize ability and quality of life. This is not an easy equation and there will be endless debate about where that balance should lie. This, however, is healthy debate as it increases awareness and understanding that will benefit all participants in it.</p>
<p dir="ltr">Thank you again for taking the time to connect with me about the discussion we’ve generated through our poster. As we knew we would likely be doing when we posted it, we will be adjusting the wording of the contentious statement in the near future. I appreciate that what we change it to may not satisfy everyone, but I hope that you and those who follow and contribute to your blog know that SCI BC knows that finding a cure for SCI is a priority for almost everyone, but that where it fits on peoples priority list varies greatly.</p>
<p dir="ltr">I will be more than happy to continue the dialogue.</p>
<p dir="ltr">Sincerely,</p>
<p dir="ltr">chris<br>
Chris McBride, PhD</p>
<p dir="ltr">Executive Director</p>
<p dir="ltr">Spinal Cord Injury BC <br>
780 SW Marine Drive, Vancouver, BC   V6P 5Y7  | www.sci-bc.ca | twitter: @sci_bc | Facebook:  SpinalCordInjuryBC | YouTube: </p>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3760793020687154078.post-89719033327501997172014-10-07T14:11:00.001+09:002017-10-10T10:42:35.764+09:00What does, "It's not about a cure. It's about quality of life." mean?
<p dir="ltr">A recent poster put out by SCI BC (Spinal Cord Injury British Columbia) has caused a bit of a stir. While the poster mentions a lot of important facts about spinal cord injury, including letting people know that SCI is more than just 'not walking', it ends with the line which causes the controversy.</p>
<p dir="ltr">"It's not about a cure. It's about quality of life."</p>
<p dir="ltr">I think that many of us in the SCI community have taken this to mean that a cure is not necessary as walking is not the problem. Therefore if you fix the secondary issues, you have created a Good quality of life and forget the walking part.</p>
<p dir="ltr">Many of us believe that this is kind of logic is crazy. We all agree that secondary complications do reduce quality of life ALONG with not walking AND/OR not being able to use your arms. The difference is that we think cure IS quality of life. Cure paralysis and you cure the many problem that go along with it.</p>
<p dir="ltr">But before causing an uproar, it would be best to go to the source and ask what this line from the poster actually means. So I've written to Executive Director Chris McBride and Chairperson Edward Milligan and hope to published their response.<br>
____________________________</p>
<p dir="ltr">Dear Messrs McBride and Milligan, </p>
<p dir="ltr">My name is Dennis Tesolat, a Canadian living in Japan and a paraplegic. I write a blog at www.StemCellsandAtomBombs.org about paralysis cure. The blog is aimed at both educating people about paralysis and cure as well as getting the community involved by giving people a voice in how government, foundations, and other organisations deal with the question of cure.</p>
<p dir="ltr">Lately I haven't put the work that I should into this project as I've also been dealing with many of the secondary complications you mentioned in your recent poster about SCI. I was happy to see your organisation educating people about these issues. It's very true that when people see those of us with SCI, paraplegics especially, that they think it's all about walking, so it was good to see the poster list off the other forms of torture we live with.</p>
<p dir="ltr">I also feel that I should let you know that the poster has created a bit of a stir among cure activists. The bottom part carries the line, "It's not about a cure. It's about quality of life." Many have taken this to mean that SCI BC doesn't believe that a cure is necessary, or at least not a priority.</p>
<p dir="ltr">Therefore I would like to ask you to clarify the meaning of this line and SCI BC's position regarding cure. I personally would like to hear that your organisation's position is that cure IS quality of life and that we have misread your intention, but of course, SCI BC will have its own policy.</p>
<p dir="ltr">I look forward to receiving and publicising your response.</p>
<p dir="ltr">Respectfully,<br>
Dennis Tesolat</p>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-3760793020687154078.post-84253586270716572702014-08-15T12:33:00.001+09:002017-10-10T10:42:35.749+09:00Sign to support the "Spinal Cord Regeneration Initiative Project"<span style="font-family: Georgia, Times New Roman, serif;">From our good friends in Minnesota! (http://mission2adventure.blogspot.jp/2014/08/poster-email-for-spinal-cord.html?view=classic)</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: #fafafa; color: #333333; font-size: large; line-height: 19.600000381469727px; text-align: justify;"><b>PLEASE SIGN & SHARE THIS PETITION:</b></span><br style="color: #333333; line-height: 19.600000381469727px; text-align: justify;" /><br style="color: #333333; line-height: 19.600000381469727px; text-align: justify;" /><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;">Tell the US President and Congress to support a </span></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;">"<b>SPINAL CORD REGENERATION INITIATIVE PROJECT</b>". </span></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;"><br /></span></span>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-0nc989AidpsGJvyNptwQOh6z7OBFckRLsw12nJn3tH2P3OVGu7oFsxif2p80nktdJHXiSzzVT1W7YGnue3ZECmydNttz7BMPA6wiNMjL0FvEZsQ30cwrq2UP8dX24fn49vyYedII55U/s640/blogger-image-955342168.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-0nc989AidpsGJvyNptwQOh6z7OBFckRLsw12nJn3tH2P3OVGu7oFsxif2p80nktdJHXiSzzVT1W7YGnue3ZECmydNttz7BMPA6wiNMjL0FvEZsQ30cwrq2UP8dX24fn49vyYedII55U/s640/blogger-image-955342168.jpg" height="320" width="246" /></a></div>
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;">It's easy, all you have to do is click this link: </span><b><a href="http://wh.gov/leJXF" style="-webkit-transition: color 0.3s; color: #009eb8; display: inline; line-height: 19.600000381469727px; outline: none; text-align: justify; text-decoration: none; transition: color 0.3s;" x-apple-data-detectors-result="0" x-apple-data-detectors-type="link" x-apple-data-detectors="true"><span style="font-size: large;">http://wh.gov/leJXF</span></a><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;">, </span></b></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;">type your name and email address, then verify your email, it takes about one minute. <b>Non US residents can also sign.</b></span></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;"><br /></span></span>
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;">This project will help over 5.5 million US citizens who live with spinal diseases such as Spinal Cord Injuries, MS, ALS, and many other life altering spinal diseases. This petition promotes medical research for functional outcomes and enhancing access to physical therapy and fitness for people living with Spinal Disorders. </span></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;"><br /></span></span>
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;">100,000 signatures are needed by </span><a href="x-apple-data-detectors://2" style="-webkit-transition: color 0.3s; color: #009eb8; display: inline; line-height: 19.600000381469727px; outline: none; text-align: justify; text-decoration: none; transition: color 0.3s;" x-apple-data-detectors-result="2" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors="true">August 27th, 2014</a><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;"> for an official response from the White House, so please share now and SPREAD THE WORD!</span><br style="color: #333333; line-height: 19.600000381469727px; text-align: justify;" /><br style="color: #333333; line-height: 19.600000381469727px; text-align: justify;" /><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;">Check it out on:</span><br style="color: #333333; line-height: 19.600000381469727px; text-align: justify;" /><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;">Facebook: Spinal Regeneration Initiative Petition</span><br style="color: #333333; line-height: 19.600000381469727px; text-align: justify;" /><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;">Twitter: @spinalregen</span><br style="color: #333333; line-height: 19.600000381469727px; text-align: justify;" /><a href="mailto:spinalregen@gmail.com" style="-webkit-transition: color 0.3s; color: #009eb8; display: inline; line-height: 19.600000381469727px; outline: none; text-align: justify; text-decoration: none; transition: color 0.3s;" x-apple-data-detectors-result="3" x-apple-data-detectors-type="link" x-apple-data-detectors="true">spinalregen@gmail.com</a><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;"> </span><br style="color: #333333; line-height: 19.600000381469727px; text-align: justify;" /><br style="color: #333333; line-height: 19.600000381469727px; text-align: justify;" /><span style="background-color: #fafafa; color: #333333; line-height: 19.600000381469727px; text-align: justify;">Thank You!</span></span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3760793020687154078.post-49869129812635998182014-07-12T18:23:00.002+09:002017-10-10T10:42:35.586+09:00The Endparalysis Foundation<span style="font-family: Georgia, Times New Roman, serif;">An exciting new cure foundation has been launched by a paralysed woman in the Netherlands. The Endparalysis Foundation has been set up by Corinne Jeanmaire, a dedicated cure advocate who was paralysed in a car accident in 2001. The Foundation’s primary goal is to accelerate the translation of biological therapies for chronic spinal cord injury by co-financing promising research projects. 100% of all funds raised by the foundation will go directly to research. The Foundation has a very strong scientific base with experts including Dr Mark Bacon, Scientific Director at the UK’s International Spinal Research Trust, Professor Jerry Silver from Case Western Reserve University, USA and Professor Joost Verhaagen from the Netherlands Institute for Neuroscience. As well as fundraising, within the coming year foundation also aims to engage scientists and build a collaborative network in order to develop a flexible roadmap for accelerating combination therapies.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Please support this great new cure foundation by having a look at the website <a href="http://endparalysis.org/" target="_blank">here</a> and liking it on facebook <a href="https://www.facebook.com/endparalysis?fref=ts" target="_blank">here</a>.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-51015152611972730682014-06-19T19:10:00.001+09:002017-10-10T10:42:35.592+09:00BBC cure campaign continues<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYRgtZqUGGp1KV4XUGVfdcB51xLOcpyFJbjhWyHSuIg4l4Gi3bC7GYmEZpG1kHkVu4Uom7PUq9dWELp-pCrfN0MqxZ-KfWWuUnd_OKvrMWNOxDkrXKrJtIanO48-bdAH8WajGIAejCB7Fd/s1600/Picture6.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYRgtZqUGGp1KV4XUGVfdcB51xLOcpyFJbjhWyHSuIg4l4Gi3bC7GYmEZpG1kHkVu4Uom7PUq9dWELp-pCrfN0MqxZ-KfWWuUnd_OKvrMWNOxDkrXKrJtIanO48-bdAH8WajGIAejCB7Fd/s1600/Picture6.png" height="198" width="320" /></a></div>
<span style="font-family: Georgia, Times New Roman, serif;">Just this month <a href="http://stemcellsandatombombs.blogspot.jp/2014/06/email-bbc-demand-coverage-of-real-cure.html" target="_blank">250 members of the paralysis community sent emails to the BBC Trust</a> to protest against the BBC programme Horizon's depiction of robots as an an answer to the problems of paralysis while completely failing to talk about the real advancements in regenerative medicine.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Well, the BBC Trust blew us off by saying that their job was not to deal with the editorial content of BBC programmes. This is despite that fact that the BBC Trust's job is to make sure that the public interest is served by the BBC. How was the public interest served by Horizon's poorly researched segment on paralysis cure? If anything this spreads misinformation to the public about the real barriers that those living with paralysis face.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Well, if the BBC Trust cannot help us, we decided to write to the producers and the presenter to see what they had to say about our complaints.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Below you'll find a copy of the email we sent and we'll let you know the answer if and when we get an answer.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhow974Bf2nwcqhfZjG-f5WB-mOfZH0oo3J1RzrO-MD5A-IQBJlIpEYoCPXg8ew8nYWdBp5pTQqbAEEGzfDTXaqa4h24jo-jRWhLpQ8nsKVPlzxp_HrlMoOfoI7eu3V78I3ht5PYxqC6e4J/s1600/HORIZON.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhow974Bf2nwcqhfZjG-f5WB-mOfZH0oo3J1RzrO-MD5A-IQBJlIpEYoCPXg8ew8nYWdBp5pTQqbAEEGzfDTXaqa4h24jo-jRWhLpQ8nsKVPlzxp_HrlMoOfoI7eu3V78I3ht5PYxqC6e4J/s1600/HORIZON.png" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3760793020687154078.post-83971603310484696702014-06-04T23:47:00.001+09:002017-10-10T10:42:35.735+09:00Email the BBC -- demand coverage of a real cure!<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYRgtZqUGGp1KV4XUGVfdcB51xLOcpyFJbjhWyHSuIg4l4Gi3bC7GYmEZpG1kHkVu4Uom7PUq9dWELp-pCrfN0MqxZ-KfWWuUnd_OKvrMWNOxDkrXKrJtIanO48-bdAH8WajGIAejCB7Fd/s1600/Picture6.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYRgtZqUGGp1KV4XUGVfdcB51xLOcpyFJbjhWyHSuIg4l4Gi3bC7GYmEZpG1kHkVu4Uom7PUq9dWELp-pCrfN0MqxZ-KfWWuUnd_OKvrMWNOxDkrXKrJtIanO48-bdAH8WajGIAejCB7Fd/s1600/Picture6.png" height="198" width="320" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span lang="EN-GB">You may have heard of the<span class="apple-converted-space"> </span><a href="http://www.longitudeprize.org/challenge/paralysis"><span style="color: blue;">Longitude Prize</span></a><span class="apple-converted-space"> </span>– a UK-based scientific committee
offering a £10m prize for the solution of one of humanities greatest
challenges. Six challenges have been shortlisted, one of which is paralysis.</span><span lang="EN-US"><o:p></o:p></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span lang="EN-GB">A
BBC documentary series called<span class="apple-converted-space"> </span><a href="http://www.bbc.co.uk/iplayer/episode/b044mkxt/horizon-the-10-million-challenge"><span style="color: blue;">Horizon</span></a><span class="apple-converted-space"> </span>aired
on 22 May to introduce the six challenges. Much to our dismay, the segment
on paralysis focussed primarily on compensatory devices such as wearable robotic
suit with almost no mention of regenerative medicine or cell-based therapies.
Prize organisers have highlighted that complications due to paralysis reach
further than just mobility and yet the ‘solution’ to paralysis proposed by
Horizon focussed solely on robotic walking.</span><span lang="EN-US"><o:p></o:p></span> </span></div>
<span style="font-family: Georgia, Times New Roman, serif;"><span lang="EN-GB"></span></span><br />
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<span lang="EN-US"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span lang="EN-US">Robotics are very popular
at the moment and the media appear fixated with images of people ‘standing’ and
‘walking’. However, for a majority of those living with paralysis, compensatory
devices offer little in the way of dealing with the real problems of paralysis.
These wearable devices do not offer any recovery of function resulting in a continuous
struggle with bladder, bowel and sexual dysfunction, neuropathic pain, poor
circulation and a whole host of other paralysis-related health issues. To some
in the paralysed community it feels as though funding of compensatory devices
is money spent on keeping people paralysed. It’s also worth mentioning that
wearable robotic suits do nothing to mitigate the huge financial burden that
paralysed people place on governments. </span><span lang="EN-US"><o:p></o:p></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span lang="EN-GB">We
know that many in the community desire the return of different functions and
not just walking. Regeneration of the spinal cord has the potential to improve
many different functions while wearable suits will only ever deal with robotic
walking. It is disheartening to see the media so fixated with these devices
when they offer so little to paralysed people. Why is so little airtime being
given to regenerative medicine? Regenerative medicine actually has the
potential to radically transform people’s lives by addressing priorities as
identified by the community themselves.</span><span lang="EN-US"><o:p></o:p></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span lang="EN-GB">Thankfully,
regenerative medicine IS focussing on paralysis and all the associated
problems, but how come there was no mention of this approach on the show? There
are numerous<span class="apple-converted-space"> </span><a href="http://u2fp.org/wp-content/uploads/2014/05/CT-Acronym-Chart-5-6-14.pdf"><span style="color: blue;">clinical trials</span></a><span class="apple-converted-space"> </span>which are testing emerging therapies
involving cells, genes and enzymes and yet none of these were discussed or even
mentioned by the BBC. These therapies don’t seek to compensate, they seek to
cure and it’s time that there was fair representation of this approach in the
media. </span><span lang="EN-US"><o:p></o:p></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span lang="EN-GB">Join us in
asking the BBC to fairly represent the current state of regenerative medicine
by using the simple online form below.</span><span lang="EN-US"><o:p></o:p></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span lang="EN-GB">We're hoping
that with enough emails going<span class="apple-converted-space"> </span>to
Ms. Diane Doyle, Acting Chair of the BBC Trust (the BBC Trust is the guardian
of the public interest at the BBC), some airtime will be dedicated to the many
varied <a href="https://www.blogger.com/null" name="_GoBack"></a>and exciting avenues which are currently
being pursued in regenerative medicine, with regards to paralysis. Time has
been given to compensatory devices and robotics and we'd now like our fair
share of media coverage to redress this balance.</span><span lang="EN-US"><o:p></o:p></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span lang="EN-GB">Compensatory
devices = no return of function</span><span lang="EN-US"><o:p></o:p></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span lang="EN-GB">Regenerative
medicine = return of all function</span><span lang="EN-US"><o:p></o:p></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span lang="EN-GB">Which do you
want the media to be discussing?</span><span lang="EN-US"><o:p></o:p></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span lang="EN-US">Go below to send an email to the BBC
and ask them to be honest about regenerative medicine for paralysis cure.</span><span lang="EN-US"><o:p></o:p></span></span></div>
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<script src="http://www.emailmeform.com/builder/forms/jsform/kU1rG8AWcS1Vd2REiX6f5Yy3J" type="text/javascript"></script>Unknownnoreply@blogger.com1