31 December 2012

Wishing all of you hope for 2013

The end of another year.

I've now seen part of 2009, and all of 2010, 2011, and all of 2012 as a paraplegic. My paralysis has caused me to have three operations and spend almost one and a half years in hospital.

Everything that has happened to me I later read to be quite rare conditions starting with my initial 'injury', a subdural hematoma in my spinal cord, very, very rare, probably caused by an arteriovenous malformation also rare. I then had an operation for an arachnoid cyst which formed at the initial lesion site, quite rare, and then followed up by syringomyelia which is like a fluid filled tube in the spinal cord which goes upwards, thus causing damage above my injury level. For me this meant a loss of sensation in my back and some pain in my upper right arm.  Syringomyelia, also rare. I've had so many rare things that I sometimes joke to myself that I ought to start buying lottery tickets.

You'd think that by this point in the game I'd start to lose hope in ever walking (and going to the toilet normally and making love - let's not forget these biggies) like before, but I haven't. 

And I tell you that my hope is not based on a simple want or an illusion, but on real scientific facts that someday we will return from paralysis.

It's impossible to name ALL of the big research going on and because I know that many of you have an aversion to reading long scientific papers, I would like to introduce you to hope that you can watch.

In my September and October blogs I introduced you to the Working2Walk conference held in California. This conference introduced some amazing new research into curing paralysis and not only was this information made available to the participants, but it’s also available to all of us on the Unite 2 Fight Paralysis vimeo site.

I urge you all to spend some time watching these videos and learning about the real hope that exists for us. 

And as always, I urge you not to just sit and wait for cure to bite us in our collective rear ends, but to work towards it. If you don't know what to do, a good place to start is with my blog’s CureCaptains or the Cure Warriors run by U2FP. These programmes help you participate in a cure for paralysis.

We also have some work ready to go for January 2013. First we will be meeting with a leadership team from the Rick Hansen Institute/Foundation (RHF/I) to talk about their vision for a cure for paralysis. Many of you supported our actions aimed at RHF/I in the past and it was your emails of support that finally got them to agree to meet with cure activists from across the world to hear our ideas on how they can further a cure for chronic spinal cord injury.

Also, on 15 January, a colleague of mine from the UK and I will talk with the CEO of Christopher and Dana Reeve Foundation to talk about our concerns that they are spending too much time 'celebrating' paralysis, and not putting out enough information out on 'curing' paralysis. 

Both of these meetings have been set up because you all continue to stir hope and support our actions.

I leave you with one final message for next year from a man who is my hero; Tommy Douglas who led the first socialist government in all of North America when he was the premier of Saskatchewan, and is the father of socialized medicine in Canada.

"We should never, never be afraid or ashamed about dreams...Where people have no dreams and no hopes and aspirations, life becomes dull and a meaningless wilderness."

21 December 2012

Working2Walk - the book

Many of you know our friend Kate Willette, who's been writing the Working2Walk live blog for the last five years. She's come up with a way to produce a book about the conference that we'd all like to see in as many hands as possible. The way it works is:
  • She describes the project plan in detail, and the clock starts ticking.
  • She reaches out to everyone who would be interested in the finished product.
  • She asks for people to back that project by pre-ordering a book or two, sharing the idea with their own communities, and kicking in a small amount to pay for the cost of production and shipping.
So far, she's got commitments for more than half the project! There's a time limit, though, and if she doesn't get fully funded by January 6th, there won't be a book!
If you can help, go to Kickstarter now and do it! Then add a note and forward this e-mail to everyone you can think of. We really want this to happen; we really want our story to be out there in print, in hospitals and libraries and exercise facilities and homes.

Many thanks from everyone at Unite 2 Fight Paralysis
This post was reprinted from a 19 December emailing from Unite 2 Fight Paralysis

18 December 2012

You speak to the Rick Hansen Foundation & Institute

First of all, I'd like to thank all our readers out there who stuck with us through all our campaigns to the Rick Hansen Group (RHG: Rick Hansen Foundation and Rick Hansen Institute). All the way from our first campaign in June of 2011, followed by our appeal for direct talks in August 2011 and ending with the last campaign targetting the Interdependence conference in May of this year. We finally will get what we've always asked for, a chance for direct talks with those leading RHG.

After some preliminary discussions and email between me and RHG, it looks like three delegates from our campaigns from Canada, the UK, and Japan will meet leaders of RHG by skype. Our goal, just one thing, to find out about RHG's vision and plans to become leaders for a cure for chronic spinal cord injury (SCI) and how we the paralyzed and our supporters can be involved.

From the very beginning we understood that the voices of ones and twos are easily shunted aside and the more we spoke in unison, the louder our voices grew; from the ninety or so who sent the first protest emails to the last group of 750 who emailed RHG during our INterDEPENDENCE campaign. The paralyzed are standing up and demanding that large foundations show leadership the size of their purses in building collaboration and vision in our war on paralysis.

Thank you. These upcoming talks are your good work and you will be kept abreast of the talks.

Dennis Tesolat
BlackBerry from DOCOMO

30 November 2012

Your solidarity WILL bring a paralysis cure!

Thank you to all of you who sent an email to the Christopher and Dana Reeve Foundation (CDRF) to protest their insulting blog post 'Benefits OF Disability'. In just a few days almost 170 people sent protest emails to CDRF to tell them to concentrate on CURE.

We'll keep you informed of any developments after we sent the following email this morning telling CDRF that we were ending our campaign and that they should listen to paralyzed folks and their supporters all over the world and work on a cure, not a celebration, of paralysis.

Dear Mr.Wilderotter,

My name is Dennis Tesolat, one of organisers of the recent email campaign regarding the "Benefits of Disability" blog which you hosted on your website. There was widespread outrage regarding this article, but instead trying to get your attention as individuals we decided that the message would be much clearer as a group. Often when we speak as individuals, our voices are shunted aside. This way you know that with a relatively small, low profile appeal, there are quite a few folks who don't like the article, and more than that, people would like the public face of CDRF to talk a little more about cure.

The publication of the blog on your website has caused outrage primarily because of the insulting context of the article, but also because it highlights a far more serious issue within CDRF; poor communication regarding cure related activities. CDRF is vocal in its support of care and quality of life initiatives but the message that comes out of CDRF regarding cure is often not as clear, or as loud. Surely equal space should be given to both care and cure initiatives ensure today’s care and tomorrow’s cure.

I hope that you understand the real value of your organization and the high impact of your foundation's name. CDRF has a real opportunity to be a leader in this field. However, statements in celebration of paralysis, the mainstay of current CDRF public announcements, discourage community support as these messages negate your very real focus on curing spinal cord injury. CDRF’s communication strategy regarding cure initiatives lacks structure and coherence, leading many to believe that cure is in fact not a CDRF priority. We question the impact that this poor communication strategy regarding cure has on the ethos of the whole organisation; is it really about finding tomorrow’s cure, or is it just about celebrating disability? The public messages you put out are not just advertising, but will also impact your organization's own internal focus.

I hope this letter can be accepted as an invitation to dialogue. We would be happy to talk with you about some of the issue that CDRF is currently facing regarding cure activities and related communication strategies. The email campaign regarding the article will be brought to a close. We hope it has enabled internal insight and analysis into the message that CDRF puts into the community. We hope our voices have been heard and we look forward to seeing improvements in the great work that CDRF does.

Dennis Tesolat

23 November 2012

One click to stop the NONSENSE and stand up for paralysis CURE

I want you to take one second to stand up for paralysis cure and send a message to the CEO of the Christopher and Dana Reeve Foundation (CDRF) and tell him that you share my outrage. Please read on.

Despite what a majority of us feel is a living hell, there are apparently many benefits to paralyzed life; that is according to Michael Collins who wrote the article "The benefits of disability" on the CDRF website.

Like me, you'll probably be infuriated.

Adding insult to injury, not only was this the opinion of one writer, CDRF found it worth putting up on Facebook. If we don’t say something, everyone will think that we too feel there are many benefits to disability.

The author's attitude, which CDRF seem to support, is exactly the kind of thinking that holds back a cure for paralysis and other disabilities. As long as people keep talking about our good fortune and all the supposed ‘benefits’, a cure will never be urgent, but it is. This guy makes it sound like being paralyzed is OK because of all the great benefits available.

Well, I don’t want this guy speaking for me, and neither should you.
Some people have ‘liked’ his post on Facebook as he refers to Thanksgiving and Christmas as a time to reflect on the blessings of disability. Others have asked what is there to ‘like’. The suffering, perhaps? His sentimentality about this time of year really detracts from the far more serious issues of living with a disability year-round.
Instead of using the holiday season to be thankful for our disabilities, lets use it to appeal to the feeling of human solidarity that will someday lead to a cure for our devastating injuries.
You can help make CURE a priority in two really quick steps by letting CDRF know that they should get back to concentrating on curing paralysis instead of sending us insulting holiday messages.
  • Send a message to CDRF by clicking below and tell them that you're insulted by the "Benefits of disability" and demand that they take it off Facebook and their website.
  • Go to the Facebook page and leave your own comment to the author
This campaign has now ended. Thank you for all your support.

10 November 2012

Finally some answers from the Rick Hansen Institute

Compared to getting answers from the Rick Hansen Foundation, the Rick Hansen INSTITUTE gave us some answers after only a few emails and some back and forth on facebook (still too slow in my opinion). 

I'm happy that they gave us answers and that the answers were quite detailed, but I have to admit that in my opinion, the answers clearly show that they are doing nothing, or very very little, to deal with a cure for chronic spinal cord injury.

RHI's advertising makes it look like they are dealing with a cure for chronics. Have a look at http://www.rickhanseninstitute.org/images/header/trudeau_oneday1.jpg and see as one of their own board members, Marie Trudeau who was injured at eighteen, says that, "One day...I hope to run on the beach." This is a clear statement that they are committed to a cure for chronics; I just wish that their research showed the same commitment.

Another good point is that they have agreed to talk. We are in the midst of trying to organize the first talk between myself and Mr. Bill Barrable, RHI's CEO. I'll keep you all posted about the progress.

Now without further ado, I will let you judge for yourself about the amount of RHI's work on a cure for chronic spinal cord injury.


Blue: Our questions to RIH
Black: RIH answers
Green highlighting: our highlighting of the main part of the answers
Red: Our thoughts and/or questions
You can also download this document at http://www.scribd.com/doc/112757536.

Q: What percentage of your budget went to research (basic or translational) for a cure for chronic spinal cord injury in 2009, 2010, and 2011?

A: RHI hasn’t and doesn’t invest in basic or discovery research.
I guess that translation and not basic research is their mission, but whether this is correct or not is a different story. Regardless of this we need to find out what basic and pre clinical research they are looking at for chronics. Since they are involved in translation, they should be on the lookout for prospective research aimed at chronics.

The cost of basic science research continues to increase, with the funding required to do pre-clinical research on a potential SCI therapy in the multi-millions. In conversation with our NIH partners, RHI was advised to focus on the areas of research that are essential to translating research from the basic science discovery to the patient's own bedside,
Including their answer about ICORD below, we now know who is responsible for basic research and who is responsible for translational research.

where funding is generally harder to come by.  Large public research funders like the Canadian Institutes of Health Research, the Natural Sciences & Engineering Research Council, and the National Institutes of Health (USA) fund this type of research,
Again, if they can name the institutions responsible for basic research, what research is RHI currently following for chronic spinal cord injury?

whereas there are few logical funders for health services research, best practices implementation (to improve and standardize SCI care), clinical trials networks, and other forms of capacity building for SCI clinical research. 
Thus, RHI has been directed to invest our federal funding in these areas that are essential pieces of translational research (patient registry and research platform, clinical research network and standardizing SCI care and outcomes across the country) that are unlikely to receive support from other funding. I
These are three things they do.
Patient registry and research platforms: how does it apply to chronics?
Clinical research network: Yes, can be used for chronics but is a whole network really necessary.
Standardizing SCI care and outcomes: Outcomes must be their registry. Important for acute cure but I don’t see the benefit for chronics.
In a sense it’s like putting the care ahead of the horse.

in this way, RHI is ensuring we are good stewards of our public funding, avoiding duplicating what is being done by our discovery science partners at ICORD. Following this strategy, RHI/RHF also contributes to seed funding for our SCI research partners at ICORD, in order to enable SCI academic researchers to do the preliminary research necessary to obtain research grants. 
Any seed funding toward a cure for chronic SCI? Again, not naming it in this document makes one doubt that there is any seed funding for chronic SCI. If they can do seed funding for ICORD it does mean that they are involved in basic research by financially supporting the work at other organizations.

Now, onto where we spend our time. About 20% of our projects deal with reducing paralysis, and another 40% or so aim to enhance physical function. Unfortunately, it is next to impossible to calculate accurately how much of our budget was spent on a cure for chronic SCI, as many of our projects target more than one expected outcome. For example, our Rick Hansen Spinal Cord Injury Registry (RHSCIR) collects data on people in Canada with an SCI,
Reducing paralysis: is not cure and often reducing paralysis is dealing with outcomes immediately after injury.
Enhancing physical function: by doing what? How do you enhance physical function of a complete chronic injury without regeneration?

Registry: important for measuring outcomes in acutes. But what I’ve heard of the registry it doesn’t follow people past two years. I’ve also heard that includes a lot of demographics without follow up at different stages.

Actually registries done by EMSCI and NACTAN are enough to monitor the evolution of patients with SCI? Why is work being duplicated as no one can see the difference between people with SCI in America or Europe.

which is anticipated to help answer a number of research questions related to the cure, to alleviating secondary complications, and other areas. As part of RHSCIR, a survey of people with spinal cord injury was conducted to assess their readiness and willingness to participate in stem cell clinical trials. So this one activity within RHSCIR was aimed at the cure for chronic SCI, but it is not possible to budget this out as it is part of the larger RHSCIR project.
This was a survey, not “aimed at the cure for chronic spinal cord injury.” Also, a lot of work is going on without cells. Why the focus on cells?
What was the point of a survey like this? How can you ask people if they would like to undergo some non-defined procedure? Who would agree?

Similar types of activities are carried out within other RHI projects, such as our Access to Care and Timing project and others.
Important, but in no way aimed at chronics.


Q: What research was done in regards to question one above?

A: We define cure as reduction of paralysis and restoration of physical function post injury.
Very broad definition of cure. Any little improvement is not cure. CDRF is also involved in this kind of thinking.
The definition of cure is very simple; after medical treatment, the patient no longer has that particular condition anymore. http://kidshealth.org/teen/your_body/medical_care/curable.html 
You cannot redefine the meaning of cure so that even moving a toe becomes cure. That is not cure, it is moving a toe.

If we are strictly talking about neuro-regeneration and neuro-protection, we currently only have a handful of projects. Based on our definition of cure(s), more than half of our projects deal with reducing paralysis and enhancing physical function. Specific projects include: Access to Care and Timing, CAMPER, FES and ReJoyce, for example, could fall within the category. In addition to time into surgery and stem cell transplantation, RHI’s activities in fiscal year 2011-2012 oriented towards reduction in paralysis also included support for two multi-centre trials examining potential neuroprotective agents: riluzole and minocycline. In fact, since 2007, RHI has supported fully half of the Canadian-sponsored clinical trials on SCI.

OK. In your handful of  projects which ones deal with neuro-regeneration and why didn’t you mention them here.
Reducing paralysis and enhancing physical function is not cure. Specifically, how does Access to Care and Timing, CAMPER, FES, and ReJoyce cure chronic spinal cord injury? None of these are a biological answer to cure and only offer very limited functional improvement, if any, in chronics.
Both of riluzole and minocycline are 100% for acutes.
Yes of course they have done clinical trials, but saying “clinical trials” is not the same as “clinical trials for cure for chronic spinal cord injury. Adding this just confuses the situation especially is not one clinical trial aimed at chronics is mentioned.

We are strictly talking about a cure for chronic SCI which means recovery of functions like breathing, hands, bowel, bladder, walking..


Q: What are your future plans for both spending and research for a cure for chronic spinal cord injury in the near future.

A: RHF and RHI have recently received a commitment from the Canadian government for the continuation of its programs. RHI has submitted a new five-year business plan to guide activities towards meeting its objectives using these new funds. 
Since our questions are about chronics, why is there nothing mentioned specifically about chronics?

Given all the work conducted by RHI and others, Canada has a unique opportunity to host clinical trials for SCI, due to greater consistency in SCI care across the country. By supporting a network of clinical researchers, creating an infrastructure for clinical trials in SCI, standardizing care, enabling standard measurement of patient outcomes, and creation of a patient registry, RHI is making it possible to trial new treatments for acute and chronic SCI as they are ready for clinical trials, which is the goal we’re all working towards.  
Great. A lot of leg work may have already been done to get clinical trials going, but now the clinical trials have to start.
Standardizing care is not part of this for chronics. It’s just added in and again confuses the situation.
Measurement of patient outcomes. Is this through the registry? I don’t understand the importance of this for chronics, especially complete chronics.
There will be very few clinical trials for chronic SCI in the future because very few labs are doing chronic SCI research and that is also because orgs like RHI/RHF failed to direct founds restricted to chronic SCI research.

(RHI’s fiscal year ends March 31, 2013, so we’re currently wrapping up a number of projects started as far back as 2007. Details on new projects will be available in the new year).

28 October 2012

More reasons to support Working2Walk and Unite2Fight Paralysis

Irvine, California  1-3 November
Today I'm doing a follow up from my last post about the Working2Walk (W2W) conference being held in Irvine, California on 1-3 November. In my last post, "Working2Walk - I'll be there in spirit an pocketbook" I talked about some of the reasons why we should support this conference even if we can't attend and how I made a small donation to Unite2Fight Paralysis (U2FP), the conference's main sponsor.

  • a yearly conference sponsored by U2FP since 2006 to bring together scientists, practioners, paralysis survivors and family members for a dynamic exchange of information and strategies
  • with a jam packed agenda of the best science to cure paralysis
  • presented by leading world scientists and others involved in raising money and advocating for a cure for spinal cord injury
  • having a live blog to read about the events as they happen (2011 W2W)
  • putting the main speakers up on the web so we can see the good news about the main scientific cure breakthroughs (2010&2011 W2W). These videos have been seen in over 50 countries.
And the things that U2FP does for the spinal cord injury community outside of the W2W conference.

These are the the first hand benefits that we all get from this conference and this organization, and why I made a donation to support their work.

But there is a more personal side because U2FP's work IS personal. 

U2Fp understands firsthand the challenges and issues that accompany an SCI. They aren't driven to our work by a paycheque. They are driven by the love they have for the people who are injured. Everyone on the U2FP board either has a SCI or a child with one. They're passionate about moving therapies forward and witnessing recovery in our lifetimes. 

The researchers they work with, recognize this and partner with them to better understand the science and work with us to advance it.  The scientists and researchers understand the value of this partnership and commit year after year to participating at W2W. U2FP needs more people to support their work, so that they can develop additional strategies to support the researchers work and move us all closer to recovery. 

So, even if you can't attend, you do get a benefit and I hope that you can join me in supporting U2FP's wonderful work.

19 October 2012

Do I smell or something?

I'm starting to get the distinct feeling that the people at Rick Hansen Foundation and Institute don't want to answer questions from the public. Not even questions from their own constituents.

I asked,
1. What percentage of your budget went to research (basic or translational) for a cure for chronic spinal cord injury in 2009, 2010, and 2011?

2. What research was done in regards to question one above?

3. What are your future plans for both spending and research for a cure for chronic spinal cord injury in the near future.

And they answered.
Hi Dennis,

Thanks for writingus again with your questions.

We share your passion in accelerating progress towards a cure for paralysis after spinal cord injury, although we may not always agree on the meansto get there.

We're a young organization (created in 2007) now enteringour next five-yearwork phase.
We're currently wrapping up many of our olderprojects and about to embark on some exciting new initiatives in our three core areas: cure, care and collaboration.

In the meantime, our FAQ page (http://www.rickhanseninstitute.org/what-we-do/faqs#percentage )providesa breakdown of projects by core area,ourwork in the cure sphere, someprogress, funding sourcesand where we're heading.

The Rick Hansen Institute
Rick Hansen Institute
6th Floor, Blusson Spinal Cord Centre
6400 - 818 W. 10th Avenue, Vancouver, BC V5Z 1M9
t: 604-707-2100
e: info@rickhanseninstitute.org

A world without paralysis after spinal cord injury.

Follow us:

Follow the whole conversation between me and the Rick Hansen Institute

1. To Rick Hansen Institute: we don't need paper heroes - http://stemcellsandatombombs.blogspot.com/2012/09/to-rick-hansen-institute-we-dont-need.html?m=1

2. Pants on firs - http://stemcellsandatombombs.blogspot.com/2012/10/lxxx-lxxx-pants-on-fire.html?m=1

3. Copy and paste the answers. Thanks. - http://stemcellsandatombombs.blogspot.com/2012/10/copy-and-paste-answers-thanks.html?m=1
Dennis Tesolat
BlackBerry from DOCOMO

14 October 2012

Vote for your favourite image

Ask most people that I work with and they will tell you that I love my work to be constructively criticized. It's what makes the end product better.

There was some criticism of the image I chose of the woman dancer (image 2). Some believed that she looked like a stripper and maybe that it wasn't the most positive image that I could have chosen. I truly believed the woman to be a dancer and didn't even consider the fact of what others might have thought. A friend of mine told me that it couldn't be a stripper because strippers dance in heels and my image was clearly a dancer, but I guess we all have different eyes and I truly do appreciate the comments.

So, what I'm going to do, because I believe that most people have good sense, and the last thing I want to do is divide us over an image, I will let those who follow my blog, my facebook friends, your facebook friends, anybody, vote to decide what the best image is.

I think people can chose an image that won't insult most people. 

It's up to YOU to chose. I've picked five that I like, at least that were free and not stolen, and I'll leave it to you.

You can vote in one click below to pick the image that I will use for our current Rick Hansen Lobbying campaign. For more information about the campaign, please see here.





The vote is over and image 3 wins the race. Thanks to all of you who voted.

13 October 2012

Rick Hansen Foundation lobbying

This below letter was sent by fax and email after reading information about the Rick Hansen Foundation's (RHF) plans to start lobbying to secure government funding for the next five years.

Our goal is to make sure that there is a commitment by RHF to fund basic and translational research for a cure for chronic spinal cord injury. 

The signatories to this letter all want RHF to be successful in their bid to secure funding, but refuse to idly sit by and allow words and phrases like 'cure' and 'a world without paralysis after spinal cord injury' be used to raise funds if there is no effort to fund research for a cure for chronic spinal cord injury, or at least a statement from RHF saying that they do not support research for a cure for chronic spinal cord injury.

We who are currently living with spinal cord injury and our supporters will not be left behind and told to shut up, sit down, clap our hands, and pass the donation bucket.


04 October 2012

Copy and paste the answers. Thanks!

Dennis Tesolat
Japan, Osaka-shi,

5 October 2012

Via FAX & Email

Bill Barrable, CEO
Rick Hansen Institute
6400 - 818 West 10th Avenue,
Blusson Spinal Cord Centre,
Vancouver, British Columbia,
FAX: +1-604-707-2121
Email: bbarrable@rickhanseninstitute.org

Dear Mr. Bill Barrable,

Thank you for your reply.

I'm sorry if I have missed any answers that RHI or RHF have sent me in the past.
Actually, this is the first time that I have written to RHI and the only other time that RHI 'signed' an email was the very first time. After that, each email was sent from Mr. Art Reitmayer, the past CEO of RHF.

Therefore, if you've already answered in the past, please forgive. This means that you should have the answer at the ready since you have already answered.

So here we go.
1. What percentage of your budget went to research (basic or translational) for a cure for chronic spinal cord injury in 2009, 2010, and 2011?

2. What research was done in regards to question one above?

3. What are your future plans for both spending and research for a cure for chronic spinal cord injury in the near future.

Thank you for your patience in answering my questions. I've tried to find the answers that you spoke of, but failed. If you could just copy and paste the information, it would be well appreciated.

Dennis Tesolat

Dennis Tesolat
BlackBerry from DOCOMO

Pants on fire!

Mr. and Mrs. Institute must be really ashamed of their son, The Rick Hansen Institute after the letter he sent me. Yes, I received a letter signed, Rick Hansen Institute (RHI). Now either it was signed by Mr. and Mrs. Institute’s son, OR, no one at the RICK HANSEN INSTITUTE was willing to take responsibility for the rubbish that was written in it so no one signed it. I tend to believe the latter as I looked on Canada411 and only found one person with the surname ‘Institute’ but that person was in Toronto.

Let’s go back a second.

Many of you will know that I have been involved in writing to the Rick Hansen Foundation (RHF) about their commitment to a cure for CHRONIC spinal cord injury. You’ll also know that they have NEVER NEVER NEVER answered this question.

You can see the whole explanation at www.bit.ly/HansenFoundation

So this time I wrote to the RHI to see about their spending and research since they receive $12 million of RHF’s $13 million that they endow on ‘outside’ organizations. The email I sent to Mr. Bill Barrable, RHI’s CEO, can be found at http://bit.ly/paperheroes

I was shocked that he would even dare say, "We believe that we have been very responsive to all your requests."

For one, we have never written asking questions to the RH INSTITUTE. They have only ever been cc'd into the questions. Furthermore, the responses have never come under the name of RH INSTITUTE except for our very first ask. Other than this, we have only ever received answers from the Rick Hansen Foundation and Mr. Art Reitmayer who was the CEO. 

So how can they in good faith write that they have, "always been responsive to our requests."

Are RHF and RHI the same? They must believe so. Well, if they are the same, I think they should stop acting as two separate entities and the costs that it entails  like office space, telephones, and administrative staff. It's starting to sound weird to me.

I'm starting to feel that two groups that can't answer questions about spending on regeneration or a cure for chronic spinal cord injury are somehow hiding something from the community of the chronically injured.

As always, I hope I'm wrong and that they're not answering because they are too arrogant and feel that they don't owe US, the paralyzed, an answer, not because they're not spending on chronic cure.

I guess this means a new campaign. Stay tuned.

By the way, just in case you don't know who I am, I am Dennis Tesolat. I take responsibility for what I write.

30 September 2012

Working2Walk - I'll be there in spirit AND pocketbook

I've never done this on my blog before, but today I'm happy to make a very important announcement.

I made a small donation of USD125 to Unite2FightParalysis (U2FP) today. 

Let me tell you why I did and why I think you should, too.

The amount of my donation is equal to the early bird registration for the Working2Walk (W2W) conference that they are holding in Irvine, California on 1-3 November. For those of you who don't know what Working2Walk is, let me tell you just a little.
  • a yearly conference sponsored by U2FP since 2006 to bring together scientists, practioners, paralysis survivors and family members for a dynamic exchange of information and strategies
  • with a jam packed agenda of the best science to cure paralysis
  • presented by leading world scientists and others involved in raising money and advocating for a cure for spinal cord injury

I wish I could attend W2W, organized by U2FP, but because of distance and pain I really can't go to California, but distance or pain shouldn't deter us from participating even if we can't physically attend.

Last year I was skyped in from Osaka to Washington to sit on the advocacy panel. It was a great experience to be able to talk about activism in the spinal cord injury with so many at the conference and even more people not at the conference.

That's right; more people saw me who weren't at the conference than were actually at the conference. This is because the W2W organizers make sure that we benefit by:
  • having a live blog to read about the events as they happen (2011 W2W)
  • putting the main speakers up on the web so we can see the good news about the main scientific cure breakthroughs (2010&2011 W2W)

Not only this, but we benefit from the advocacy that they undertake on our behalf year round.

So this year, I'm giving something back even though I can't physically attend. I'm going to pay my registration fee by making a donation to say thank you and to continue supporting W2W and U2FP. I hope those who are able do the same, and please don't let the size of my pocketbook discourage you from donating even more.

20 September 2012

Roman Reed vetoed but we are not defeated

It was a law that WE supported. That WE backed by sending emails and faxes.

In the end, despite all our efforts, the governor of California, Mr. Jerry Brown, vetoed the law. But he didn't simply veto a law, he let down the paralyzed. He didn't just let us down in words, he let us down by taking away about $3 million dollars from the cure paralysis war chest.

There is a lot of discussion about why he did it, and since I'm no expert on California politics, the source I trust for this information is Mr. Don Reed, whose son Roman Reed the bill is named after. In Mr. Reed's latest post on StemCell Battes (www.stemcellbattles.com) he has this to say in regards to Governor Jerry Brown's reasons.

"Why did Jerry Brown do it? He stood by his beliefs.  He does not approve of fee-based government, believing programs should be paid for by the General Fund, not traffic tickets, already so expensive a poor person may not be able to pay them at all.
I understand that position, and agree with it. 
But our program was funded by the General Fund, for $1.5 million a year.
Then, two years ago, due to the economy, our funding was removed.  
We either had to find a new way to pay for the program, or watch it die."
Mr. Reed is clear about the reasons why funding does not come from the general fund as it should and does not blame Governor Brown.
"Important: I do not hold a grudge against Jerry Brown. He has an impossible task to perform. There is not enough money in the General Fund. That is not his fault, and it is the reason our program's original funding was removed.
Here is the problem.
Republicans have gamed the system. It has become virtually impossible to raise taxes on the rich. In California, Proposition 13, (a citizen's initiative funded by anti-tax groups), made it illegal to raise taxes without a 2/3 majority. Since virtually all Republicans sign a no-new-taxes pledge, the needed 2/3 majority is virtually impossible to achieve. This must change.
I strongly support Governor Brown's tax increase on upper-income Californians. If programs like ours, or school budget increases, or anything at all progressive to have a chance, taxes on the wealthy must go up."

I am actually of the same opinion. We shouldn't have to rely on add ons to fund research that changes the lives of people, but the Reeds knew that without the $1 add on, research funding for a paralysis cure would suffer, and we the paralyzed and our family and friends will also continue suffering.
So, do we give up? The Reeds aren't and are ready to go back at it starting in January. I say that we all continue to back them. After having gone through a half year of this, we're smarter and more ready than ever to take on part III of this battle.
I urge you to sign up as a Cure Captain to make sure we're all spreading the word. Not only in our Roman Reed campaign, but with all the other campaigns we are involved in for paralysis cure.

If you have a moment, a fax to the Governor expressing a polite sorrow that the bill was killed, would really be helpful.

Here is the name & fax number.
Name:  Governor Jerry Brown
Fax:  (916) 558-3160

Here is what I'm writing. Please feel free to cut and paste.

Dear Governor Jerry Brown,
I must admit that I was quite shocked after hearing that you vetoed the Roman Reed law. I can understand your opposition to fee based funding, but for the paralyzed this is the only way to fund research at the moment. 
I hope that in the future we can work together to find better ways to fund paralysis cure research.

Dennis Tesolat
Osaka, Japan

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