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Thread: Talks with Rick Hansen Foundation

  1. #71
    [QUOTE=cheesecake;1411384]Where did you get the $7.9 figure from?QUOTE]

    http://www.docstoc.com/docs/75118865...pinal-Research


    http://www.newswise.com/articles/dep...njury-research

    No, I don't believe funding is instantaneous.
    Over the past 4 years the DoD gave CRF 2.5 million in 2007 and 5.4 million in 2010 for NACTN since it's launch and inception by CRF in 2006.

    This is what Dr. Young reported on August 4th 2011, 2 weeks ago.

    "There is currently no overlap with NACTN and SCINetUSA centers. Even if there were, I don't think that there should be or would be conflict. Many centers do multiple clinical trials. At least right now, we are testing therapies on two very different populations of patients. SCINetUSA is focussing on chronic spinal cord injury and NACTN on acute spinal cord injury".

    I won't make public comment on NACTN's trial with Riluzole pills.
    Last edited by GRAMMY; 08-19-2011 at 11:17 PM.

  2. #72

    The answer is in

    I was sent the answer yesterday morning. Sorry for the delay, but I wanted to send it to those who signed the letter first to hear what they had to say before putting it out to everyone.

    The letter is below and I will be meeting with the others that signed very soon to discuss how to react to this letter. Of course we will need all of your help in making sure that cure dollars go to cure.

    Here is my take on it.
    The good.
    1. The letter states clearly that their vision is still a cure for paralysis.
    2. They keep mentioning 2012 and the new funding cycle. This means that we have to get in their with our ideas for what needs to be funded.
    3. Finally, someone with a name took responsibility for the answer. The letter was signed by the new CEO of the Rick Hansen Foundation, Mr. Art Reitmayer.

    The bad.
    1. They still cannot give us a figure for what they are spending on cure or what cure related research they have funded. Mr. Reitmayer does point us to their annual report which will be available next week and I'm very looking forward to reading.

    2. They didn't agree to talk.

    3. They didn't bother to tell us how we in the international community can help in RHF's work. This is frustrating from an organization which was founded on the basis of a man travelling around the world.

    We now need to think!


    ///////////////////////////////////////////////////////////////////////
    August 18, 2011

    Re: We would like to propose a discussion

    Dear Carles, Paolo, Arcangela, Dennis and Barb,

    We are responding to your follow-up questions in writing, to ensure our position is clearly understood.

    As we have stated several times, the work of the Rick Hansen Foundation supports the same vision Rick expressed when he set out on his Man In Motion World Tour – to raise awareness of the potential of people with disabilities by creating accessible and inclusive communities, and supporting research for a cure.

    Over the last 25 years, Rick and the Foundation have provided a strong voice and a clear vision in both these areas. The Foundation has brought diverse groups together to articulate a common goal, applied its leadership to develop the strategy and resources to achieve that goal, and encouraged these initiatives to become independent so that new ideas can be conceived and launched. Progress continues to be made and we believe that ongoing investment to the areas we have previously outlined will lead to greater outcomes in the future for people with SCI.

    A list of the programs and organizations we have funded in the 2010-2011 fiscal year are listed in our annual report, which will be available next week on our enhanced website. The information included in our annual report and T3010 is shared with government, corporate funding partners, major donors, and the public.

    As is the case with numerous charitable foundations, applications for funding are reviewed by a committee and recommendations are put forward to the Board of Directors for approval. Applications must be received from organizations who are qualified beneficiaries under Canadian Revenue Agency Charitable rules and regulations. At present, all funds for the fiscal year ending March 31, 2012 have been committed, and will be reflected in our 2012 fiscal year annual report released in the spring of 2012.

    We trust we have answered your questions on this topic and as fully transparent and prudent stewards of the funds entrusted to us, we assure you that any information that we can provide through correspondence is available on rickhansen.com.

    Sincerely,

    Art Reitmayer
    Dennis Tesolat
    www.StemCellsandAtomBombs.blogspot.com

    "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
    Martin Luther King

  3. #73
    humm...Art evidentally doesn't know we all looked at the T3010 and that's why the sci community got upset, disillusioned and thought it was time for some changes to be requested.

  4. #74
    They never answered our questions and since the facts we know are indicating clearly they are rising money in the name of a cure but they spend money just for great salaries and other things we should not give up.

    If it is needed I am ready to roll to Vancouver and I will not leave untill I see Rick.

    What to do now?

    I would start writing to the governor general as suggested by Lynnifer.
    Then get the attention of some media. I understant it is unlikely to find someomne barve enough to question what RH orgs are doing, but we should try.
    We have several months of the 25 anniversary "relay" in the media, so we need to jump in the relay somehow.
    In God we trust; all others bring data. - Edwards Deming

  5. #75
    Quote Originally Posted by lynnifer View Post
    http://rickhansen.com/code/navigate....370&postId=151

    Canada's Governor General is on board .. this could mean another huge donation by the federal government soon (or maybe not??)

    Relay across Canada starts on August 24th in Newfoundland.

    To contact the Governor General: http://www.gg.ca/document.aspx?id=325 (info@gg.ca)

    To wrap up the 25th Anniversary, the Rick Hansen Foundation and the Rick Hansen Institute will co-host an international conference and exposition, Interdependence 2012 (i2012) in Vancouver next May. This conference will inspire collaboration in the pursuit of a healthier and more inclusive world, engaging leaders and influencers from around the globe and provide an impetus to accelerate progress towards accessible communities for all and a cure for paralysis after spinal cord injury.
    Bump!
    In God we trust; all others bring data. - Edwards Deming

  6. #76
    Quote Originally Posted by paolocipolla View Post
    What to do now?

    I would start writing to the governor general as suggested by Lynnifer.
    Then get the attention of some media. I understant it is unlikely to find someomne barve enough to question what RH orgs are doing, but we should try.
    We have several months of the 25 anniversary "relay" in the media, so we need to jump in the relay somehow.
    Letter sent. Thanks Lynnifer. Except I think I screwed up and called him Sir when it was supposed to be Excellency or something. Sheesh. It's only 2011!

    Anyway, as to "what to do", how about creating a kind of petition or online compilation where as many of us as possible create a brief entry expressing that CURE is a top priority in our lives and that we'd like to see that urgency reflected in the research and budget allocation of an sci institute boasting a "world without paralysis" mandate. Seems to me that the board or PTB there decided on our behalf what's most important to people with sci, and we need to let them know that spending $0 on CNS regeneration and clinical trials is a categorical FAIL on their part.

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