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Thread: Send a question to the new CEO of Rick Hansen Foundation

  1. #21
    If they could have they would have given us a high figure to shut us up. But that wouldn't be correct so they couldn't lest they tell a fib.

    They could have ignored us, but that would enrage people.

    They couldn't give us the real number because that would risk their "a world without paralysis after spinal cord injury".

    So they did the worse thing possible, they gave us a BS response that does not answer the question and has left people a lot angrier than when we started.

    The wheels in my head are still spinning thinking of the next move.

    Remember, this is not a battle about care vs. cure.
    This is not a bunch of angry SCIs lashing out at people because we're paralyzed.

    This is a real battle about $200 million real dollars that could have already gotten us out of these chairs and had a whole group never to have to experience this hell.
    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

  2. #22
    Senior Member Leo's Avatar
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    Same reply,

    Thanks for the laugh Dennis, that is good.

    IMO. We need to point out we have many organizations doing the bidding on behalf of care, you could create a list that would take up two pages, single spaced.

    RHF along with CRF and MP could go to a 70 - 30 ratio and no one would suffer.

    Also if any group is using the term or goal to cure paralysis as there main objective then it should be.

    Let's face it we've tried to get care groups to advocate for cure legislation and they blew us off.

    They need to look at the big picture of QOL and that's the cure.

    Keep up the pressure.
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  3. #23
    Senior Member Leo's Avatar
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    Deep Thought

    sorry, i went off topic
    Last edited by Leo; 07-29-2011 at 01:11 PM.
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  4. #24
    I am very disappointed by the answer RHF new CEO gave us.

    I also see they have a professinal person for communication, Erin McMillan

    http://www.linkedin.com/pub/erin-mcmillan/10/380/505

    I called her, but she doesn't want to talk to me. I guess she wouldn't know how to answer my questions.

    About what to do next I would consider getting the media involved.

    Recently I have seen this story about the cancer society:

    http://www.cbc.ca/news/health/story/...y-funding.html

    I think CBC could be interested in digging in what RHF does.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  5. #25
    Paolo, media is a very good idea, they are very powerful and can challenge them with tricky questions in front of public. this will put them in the spotlight. but the question is what media will like to be involved. this need attention of a respectful journalist who can ask tricky questions. Likes of Melanie Reed come into mind. Can anyone follow with her may be, if in contact?

  6. #26
    Also, not sure whether this will work, but if they get any type of public associated funding, I suspect their financial accounts should be available for review, which should show line by line how/where money is spent. I don't know USA rules on this, but there must be a way of accessing their financial data on premises of checking how money are spent. Surely, someone got a legal right to do so...

  7. #27
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by paolocipolla View Post
    I called her, but she doesn't want to talk to me. I guess she wouldn't know how to answer my questions.

    About what to do next I would consider getting the media involved.

    Recently I have seen this story about the cancer society:

    http://www.cbc.ca/news/health/story/...y-funding.html
    That story by CBC is misleading ... read this:http://www.globalphilanthropy.ca/ind...y_media_cover/

    "The amount of funds spent by the Canadian Cancer Society on research over the last 10 years was up, but the percentage of the total budget spent on research was down. In 1999, 41.9 million was spent on research and in 2011 48.9 million was spent on research. Apparently there are ups and downs depending on fundraising revenue and bequests – which CCS only has some control over. Presumably this story may result in less fundraising revenue in the 2012 fiscal year, perhaps resulting in all areas of funding being cut.

    The numbers that CBC provided me are relatively constant from 1999.

    Research
    41,950,000 1999
    42,833,000 2000
    43,818,000 2001
    44,984,000 2003/2004 (change in year ends)
    42,311,000 2005
    51,960,000 2006
    47,982,000 2007
    44,596,000 2008
    48,588,000 2009
    48,364,000 2010
    48,886,000 2011"


    My sister works for a large hospital foundation in London, Ontario. They have been struggling for the past decade because of unstable economies and cannot depend upon funds that they received the year before - i.e. it's a crap shoot.

    Paolo you've probably been black-listed at RHF and your name passed around on an internal office memo not to respond to you at this point because of all the 'harassment' on their facebook page. I wouldn't be surprised.

    You want an organization to bug? Bug the Canadian Paraplegic Association - they spend zero dollars on anything cure related or research related and if I'm not mistaken, are somewhat funded (no idea how much) by government funds. The March of Dimes used to be funded 9 million per year in Ontario alone - for equipment or home modifications.

    RHF will have a shitty year for donations in 2011 as they are not holding their Wheels in Motion event. I expect this to change at the end of 2012 with a relay across Canada with hopefully corporations and the government once again kicking in some major cash. Depends upon the world economy.

    Again, we need to see something concrete from researchers. I keep coming back to this conclusion.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  8. #28
    The CPA does not have cure as part of its mandate and does not fundraise or promote itself as if it does. They also just had their budget slashed.

    I don't see how the question at hand is an attack. It's a simple request for information.

  9. #29
    harrassment????
    Jeeeeeeeez. More like fear that the community is wising up to one of the largest white elephants in the field. Take the patriotism away from this argument and look at the real figures, the misrepresentation of the Cure and the meaningless collaborations which are nothing but an SCI love parade.

    RHF will have a shitty year for donations in 2011 as they are not holding their Wheels in Motion event. I expect this to change at the end of 2012 with a relay across Canada with hopefully corporations and the government once again kicking in some major cash. Depends upon the world economy.
    Oh, so wait a minute, RHF needs more money to burn? Please no!

    Again, we need to see something concrete from researchers. I keep coming back to this conclusion.
    You're missing the point. RHF has had and still has a pot of gold to fund basic and translational research for regenerating the spinal cord. Do they spend it on that? No! Does the nice shiny ICORD building actually produce anything that contributes to Cure? No! Do RHF sponsor promising international scientists? No!

    These are hard facts!

    Paolo and the others are valid in their request for answers. This is not petty fingerpointing - it is holding the powerbrokers in the field (eg RHF, CDRF, MP) accountable.

  10. #30
    Senior Member lynnifer's Avatar
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    I'm not attacking???

    Have any of the international researchers sent requests for money from RHF?
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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