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Thread: Second question to Rick Hansen Foundation

  1. #151
    Senior Member canuck's Avatar
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    Personally I would like to see funding spread to as many ideas and concepts as possible. This is a hypothetical what if but what if stem cells turn out to be a dead end? I might be wrong but it seems that most of the "eggs" are going in the "stem cell basket"

    I hope stem cells work out but who knows.

  2. #152
    Senior Member lynnifer's Avatar
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    On RHI Facebook site, I made mention of the Jerry Silver nerve graft approach - who can argue that it is something that can be fast-tracked and surefire? How many older injuries would jump at the chance? I know I would in a heartbeat!

    If I was only 5-10yrs in, I would wait on stem cells ... but at 26yrs I want my bladder back like yesterday. Normal functional use would change the lives of so many and thrawt infection after sometimes-life-threatening infection. I see more potential there, personally.

    Canada has an opportunity to take a lead in a field where so few know how to graft nerves!

    One of my other comments along with the entire post was deleted on the RHI Facebook website ... what a slap in the face to someone who has supported them over the years with thousands from myself, co-workers (police AND fire association), family and friends. An insult to them as well.
    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

  3. #153
    Wow, Lynnifer. I feel bad about that. I wish they would have at least listened to your thoughts and enthusiasm about the nerve grafts. I'm looking into the possibility of that being fast tracked. I don't see too many drawbacks with it (except one). I hope to find out more on that really soon. But again, it is regenerative medicine that we're talking about here...not stem cells of course, but I just feel bad they wouldn't leave your thought's posted so others could share and think a little bit about it. I guess it's not part of their agenda or something. It makes me feel like the old Archie Bunker on All in the Family show hollaring "stifle" at Edith if she asked too many questions or gave an opinion on something!
    Last edited by GRAMMY; 08-18-2011 at 10:49 PM.

  4. #154
    Perhaps the only thing to consider would be if it were reversible in the event of a full cure becoming available

  5. #155
    Senior Member lynnifer's Avatar
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    This post of mine has remained on the Rick Hanson (athlete) facebook website:

    I was a rabid supporter - worked full-time shift work and gave as much as I could every year during the Wheels in Motion years. I am disappointed to learn the top 5 in this organization make over $120,000/yr - worse than the Canadian Cancer Society. All those years I worked shift work of 10hr shifts whether in snow or rain or freezing cold or unbearable heat. Pretty disappointed with this organization. - paralyzed 26yrs ago
    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

  6. #156
    Quote Originally Posted by Christopher Paddon View Post
    Perhaps the only thing to consider would be if it were reversible in the event of a full cure becoming available
    @Christopher: I'll talk to Jerry about that at W2W in October. But right off hand, I don't think a person would need to have it reversed. If it's working...it's working. (No need to reverse it...) A stem cell procedure shouldn't have any effect on it I wouldn't think. The graft doesn't cause any other nerves to be sacrificed. I'll ask specific questions on that concerning future therapies having an effect on the nerve graft and I'll let you know what Jerry says about that. (I just don't understand why there would be a need to snip a good nerve that has the bladder functioning)...
    Last edited by GRAMMY; 08-18-2011 at 11:33 PM.

  7. #157
    Quote Originally Posted by lynnifer View Post
    This post of mine has remained on the Rick Hanson (athlete) facebook website:

    I was a rabid supporter - worked full-time shift work and gave as much as I could every year during the Wheels in Motion years. I am disappointed to learn the top 5 in this organization make over $120,000/yr - worse than the Canadian Cancer Society. All those years I worked shift work of 10hr shifts whether in snow or rain or freezing cold or unbearable heat. Pretty disappointed with this organization. - paralyzed 26yrs ago
    I'm surprised they left this up on the site, but yet felt the need to remove any mention of a nerve graft that would restore breathing or bladder function for a paralyzed person... I don't get it. Was it overlooked or something?

  8. #158
    Senior Member lynnifer's Avatar
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    This one has stayed so far:

    RHI: Despite all the red-flags being waved by reputable scientists, public agencies and even governments, stem cell tourism is flourishing; the people seeking of cures and treatments overseas have fueled a multimillion dollar enterprise.

    Me: They have nothing at home to help them ... too bad we couldn't rise up like the MS Society did with the liberation treatment. There are nerve grafts that could help today .. they need funding and a trial network. Canada should take the lead on this (Jerry Silver research).

    Me: Not all of us are going to be around long enough to wait for stem cells. Nerve grafts are the quickest sure-fire way to restore function.

    Me: As a taxpayer and government funding strong within RHF, don't we get a say?
    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

  9. #159
    Wow.!!!!!!!!!!!! Now what was in the post that was deleted in it's entirity? Just curious to know what was removed from public view and why the information is suppressed like that. I've never found any of your posts mean or obnoxious...was it just the hint at regenerative medicine that made them delete your information from public scrutiny? Could your post be taken as subversive or something? I know you guys worked hard to raise that money and you supported 100% in every way possible! You're paralyzed for 26 yrs and a hard working public servant on top of being a Canadian citizen. I'm just trying to understand why they are treating you that way now. I would be hurt and upset. I'm very confused. You DO know your science and what you're talking about when it comes to the possibilities. I don't feel you should have been discounted like that!
    You have too much at stake with your health problems that have developed from being in a chair for 26 yrs. GRRRR!
    Last edited by GRAMMY; 08-19-2011 at 03:03 AM.

  10. #160
    Quote Originally Posted by lynnifer View Post
    This one has stayed so far:

    RHI: Despite all the red-flags being waved by reputable scientists, public agencies and even governments, stem cell tourism is flourishing; the people seeking of cures and treatments overseas have fueled a multimillion dollar enterprise.

    Me: They have nothing at home to help them ... too bad we couldn't rise up like the MS Society did with the liberation treatment. There are nerve grafts that could help today .. they need funding and a trial network. Canada should take the lead on this (Jerry Silver research).

    Me: Not all of us are going to be around long enough to wait for stem cells. Nerve grafts are the quickest sure-fire way to restore function.

    Me: As a taxpayer and government funding strong within RHF, don't we get a say?
    I think whoever does the PR for the RHI facebook page is a bit out of their depth tbh.

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