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.
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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.

Regards,
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
www.rickhanseninstitute.org

A world without paralysis after spinal cord injury.

Follow us:
facebook.com/RickHansenInstitute
twitter.com/rhinstitute
/////////////////

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
www.StemCellsandAtomBombs.blogspot.com
BlackBerry from DOCOMO

18 comments:

  1. Dennis: The pie chart under "What percentage of money is spent on translational research and best practices?" shows where they spend their time and money.

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    1. This comment has been removed by a blog administrator.

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  2. This is getting fucking ridiculous. Answer the bloody questions Rick & Co! Or stop stealing our tax funds and donations.

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  3. Is it me, or this going round and round for no good reason...I've read all the questions and looked at the Institute FAQ page and they seem to have answered all the questions...what exactly am I missing?

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    1. You're missing the reply. Or do you have no analytic skills whatsoever?

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  4. Lets keep up the pressure. I have seen some comments elsewhere that your pressure might have a negative effect on RHF's ability to raise funds so you should stop. I don't agree. They should answer to their constituents. However, if and when RHF comes around, investing in the best research is the next step. Would you be happy if it went to support another parallel trial of cord blood + lithium? You already know I wouldn't.

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

    RHI hasn’t and doesn’t invest in basic or discovery research. About 20% of our projects deal with reducing paralysis, and another 40% or so aim to enhance physical function, so more than half. 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, 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. Similar types of activities are carried out within other RHI projects, such as our Access to Care and Timing project and others.

    What research was done in regards to question one above?
    We define cure as reduction of paralysis and restoration of physical function post injury. If we are strictly talking about neuro-regeneration and neuro-protection, we currently only have a handful of projects. If you accept our definition of cure(s), more than half deal with reducing paralysis and enhancing physical function. Specific projects include: Access to Care and Timing, CAMPER, FES and ReJoyce projects, 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.

    What are your future plans for both spending and research for a cure for chronic spinal cord injury in the near future.
    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. Given all the work conducted by RHI and others, Canada has a unique opportunity to be the site for more clinical trials, because our system is more uniform across the country. By reinforcing a network, creating infrastructure, standardizing care, measuring outcomes, and by providing a registry, RHI is making it easier to conduct clinical research in SCI, which is the goal we’re all working towards. (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 of RHI’s 2013-2018 Business Plan will be available in the new year).

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    1. "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"

      That's really stretching it. Get a good research team to come up with a trial that has good pre-clinical evidence first, instead of, if we build it will they come.

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  6. " If you accept our definition of cure(s), more than half deal with reducing paralysis and enhancing physical function. Specific projects include: Access to Care and Timing, CAMPER, FES and ReJoyce projects, for example, could fall within the category. "

    Wouldn't health insurance cover that?

    And really how much enhancing is truthfully seen? Sure there might be the thrill of wiggling a toe and low and behold it is reported as a substantial benefit.

    When the Canadians decided to discontinue the use of methylprednisolone for acute sci, I was under the impression they wanted to support only treatments that show significant improvement.
    Half measures(the feel good ones) avail nothing!

    PS: Do you think a cure is impossible?

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  7. Looks like RHI thinks a cure is impossible otherwise they wouldn't come up with suck a ridiculus definition of a "cure". BTW the world "cure" is already well defined and understood even from children, no need to reinvent a defnition.. but it looks like RHI did that so that what they do can be called a cure or something related to a cure. Come on RHI, people from all around the wold are reading this, we are not dumb!

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  8. That RHF spokesperson has a heartbreaking obsession that by some miracle of control he will be able to fool us into believing his nonsense.

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  9. Q: "Do you think a cure is impossible?"

    A: We believe that a world without paralysis after SCI is possible. But we want to act in the areas an organization of our size (one office, 40 staff, $12-$15 million annual budget) can have the most impact, understanding that SCI and its effects are multi-dimensional and require multiple approaches. There are many talented and innovative researchers here in Canada and around the world who are doing great work in regeneration and cure. We want to make sure those innovations get tested and make it to patient care.

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    1. don't cry about the lack of money. you have a lot and if you all cooperated with other foundations, you'd have a whole lot more. It's not about how much money you have, but about how you use it. compared to a lot of groups, you're loaded, so stop whining.

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  10. OK, how are you actually making sure those innovations get tested and make it to patient care?

    Surely a questionnaire to see if patients are willing to be in a stem cell trial falls short of seeing your goal.

    BTW, who says it must be stem cells? Or even actually walking. For starters, Have you heard of the work Jerry Silver is doing that has already taken chronic rats off of vents and restores bowel and bladder? That would be a noble investment for your org to undertake.

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  11. RHI, can you list some names of talented innovative researchers who are working on a cure for chronic SCI?
    Can you list some research projects now happening targeting regeneration on chronic SCI?
    Unfortunaltly I am afraid you don't know that there is very little work, if any, being done to get people out of wheelchairs, that is because acute SCI studies are easier to set up for researchers.
    Here RHI and RHF have failed as they should have restricted founds to target chronic SCI regeneration to encourage researchers to focus on chronic SCI.
    I think we need to write to the members of parlament and to the government to explain that They need to understand the they must restrict some money to target a cure for chronic SCI to get peopple out of wheelchairs. I believe that RHI and RHF have failed on that so they should not get money from the canadian goverment.
    The canadian government needs to set up a research program on chronic SCI and keep RHI and RHF out of the game.

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  12. Hats off to Dennis for having the courage and stamina to question a legendary foundation. And at times even against the will of some fellow spinal cord injured. There are those that fall for the candy coated vision foundations and even some researchers want us to believe without even a wary eye at what is being offered. Thanks again Dennis!

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  13. The Canada Revenue Agency says the Rick Hansen Foundation improperly issued a $1.8-million tax receipt to Rick Hansen for donating rights to his name to the foundation, The Vancouver Sun has learned.

    In an Oct. 12 letter to the foundation, CRA’s charities directorate says it has “concluded that (Hansen’s donation) does not meet the definition of a gift.”

    “As it is our view that this receipt has been issued improperly, it is our expectation that the foundation should cancel this receipt … within 60 days from the date of this letter,” the letter states.

    Read more: http://www.vancouversun.com/Rick+Hansen+donated+rights+name+foundation+received+million+receipt/7473401/story.html#ixzz2AtumtwWn

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    1. On this basis, the $1.8-million tax receipt issued to Hansen — who earns at least $350,000 per year from the foundation, according to reports filed with CRA — could potentially have saved him $786,600.

      It is not clear whether Hansen has utilized this receipt, but if he has and the receipt is subsequently cancelled, he would potentially be liable for significant back taxes, interest and possibly penalties. The donation was made and the receipt was issued in 2009, but neither Hansen nor the foundation publicly disclosed the transaction.

      Read more: http://www.vancouversun.com/Rick+Hansen+donated+rights+name+foundation+received+million+receipt/7473401/story.html#ixzz2AtvRyKZf

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