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Thread: Rick Hansen doesn't dream to cure SCI

  1. #41

  2. #42
    Senior Member canuck's Avatar
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    Quote Originally Posted by Scaper1 View Post
    The walls have ears.
    It would seem that way...

    Another way a care related issue might help in the cure process directly, what would happen if somebody who sustained a SCI had other injuries that were so severe that they are in no shape to survive any surgery involved in a cure treatment. I consider anything that would reduce the damage a care issue. It only stands to reason that the less damage there is to the cord the easier and more effective a cure treatment will be.

    The same theory could apply as far as the length of time it takes to transport somebody to hospital. If somebody is injured in Northern British Columbia it can easily take 6 or 7 hours at least between the time of injury and the time the paitent arrives at a trauma center or spinal unit. Shouldn't there be a focus on making sure the patient arrives in the best possible condition?

  3. #43
    Quote Originally Posted by canuck View Post
    I think anything that can partially mitigate the extent of damage could be part of a cure treatment protocol.

    No you didn't say it shouldn't be done but definately make it sound like it should be a very low priority.
    It should be a low priority. I am a low level quad and I'm as comfortable as Im ever gonna be in a chair. What else do I need? I know that I have it good because of the fight that many older sci fought, and I thank them. But now its time to solve the root of the problems, not try to mask them.

    I know that we are no where near a cure, but part of the reason is because we spend most of the money on care.

  4. #44
    All great points, Canuck. The fact of the matter is that those who are disappointed in RHI's efforts and are fixated on a cure and a cure alone, are newly injured individuals. Those of us who have been injured for 10+ years realize a spinal cord injury is a multifaceted issue. We can't fault those who are only recently injured because they simply don't know any better.

    I want a cure just as much as the next person, and I've been injured 23 years. I just know that there is so much more to it than simply getting up and walking again from a treatment.

    For those who think RHI should spread the wealth, perhaps instead, research to see where Rick Hansen started. Make a global spectacle like he did. In fact, do something that hasn't been done before. Inspire people, and show them how crucial it is to invest in the cure. And then, when the spectacle is over, keep working your ass off until your government listens and allocates funding for your cause. Rick Hansen has made this his life long goal, and, from what I know, he has never taken a day off.

    Europe is far larger, and the population is far greater than ours. If a cure is the sole reason you exist, then dedicate your life to fighting for it. I personally realize that I can't dedicate my entire life to this cause alone. I have a family, I want a career, I want to build a life for myself that I'm proud of, and I realize that can happen, with or without a cure.
    Last edited by KiranA; 02-04-2011 at 12:27 AM.

  5. #45
    Kiran, no one is trying to take anything away from you, and especially not from Rick. Nor is everyone here newly injured, unfamiliar with the backstory, or ignorant of the complexities. What's at issue is a major research institute (ICORD in particular) that makes “cure” a prominent goal of its fundraising campaign and public image but isn't actively pursuing that part of its own mandate.

  6. #46
    Sorry, Scaper, perhaps you misunderstood what I'm saying. At the end of the day, how one defines "cure" will determine whether ICORD is living up to its mandate or not.

  7. #47
    Senior Member lynnifer's Avatar
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    http://www.facebook.com/RickHansenInstitute ... notice some of the comments from European members of this forum.
    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. #48
    Quote Originally Posted by KiranA View Post
    Sorry, Scaper, perhaps you misunderstood what I'm saying. At the end of the day, how one defines "cure" will determine whether ICORD is living up to its mandate or not.
    i sense a legal mind thinking here.
    it all in the wording, one word can mean win/lose in a contract, The AND or OR wording in a proprietary lease is my latest one.
    mike
    cauda equina

  9. #49
    Quote Originally Posted by lynnifer View Post
    http://www.facebook.com/RickHansenInstitute ... notice some of the comments from European members of this forum.
    WOW. Just read them. They're a feisty bunch........lol.

  10. #50
    Wow! I didn't know that Paolo_Cipolla was such a bad guy, but he's not.

    I didn't know that he was attacking a private citizen, but he's not. He criticizing a very public organization.

    I didn't know that Paolo against wheelchair ramps, but he's not. He hasn't said anywhere that he is against accessibility.

    I didn't know that Mr Cipolla was against the very care that he still needs, but he's not. He has never said that he's against care.

    What is sad, is that whenever someone mentions cure it becomes a terrible cure vs. care argument.

    I think the questions on this forum and the discussion on Facebook at the moment is not about whether RHI should be doing surveys and looking at Care issues, the question is...why are they not working more vigorously on a cure. This is not an opinion, it's very clear that cures start with clinical trials on regeneration, so why isn't RHI doing these.

    I wish I were wrong. I would love someone to say that they are vigorously conducting clinical trials for regeneration. Please someone, tell me that they are.

    RHI and ICORD are very public bodies, so of course people have a right to raise criticisms. They have the means to fund a lot of clinical trials, so it is fair to ask them why they aren't. Their own mandate is about finding a cure, so it is fair to ask them how much they are spending on that cure.

    If these criticism were of some poor organization or some organization whose mandate was only care, then they would be unfair. RHI and ICORD are neither of these.

    It's because RHI has so much respect in the SCI and non-SCI community that they should be taking a much, much greater role in trying to cure SCI.

    I'll raise an example. We've been reading about the new scaffold business going on in Italy and how the scientists themselves are talking about how used in a combination therapy it could probably have some good effect (if you haven't, I made some comments and linked to the article on my blog at www.StemCellsandAtomBombs.blogspot.com), here is a chance for ICORD (INTERNATIONAL collaboration on repair discoveries) to take the lead and work on clinical trials with combination therapies.

    If the mandate of ICORD is cure then why is this the research they are doing (http://icord.org/research/research-studies/)?

    It is not unfair to ask a very public body questions and expect answers, it should be taken to be helpful. What is not helpful, is to blindly rush to protect this organization from criticism by raising their past works, when that is not what is being criticized.
    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

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