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Thread: Rick Hansen Foundation lobbying

  1. #61
    Quote Originally Posted by paolocipolla View Post
    Lynnifer,

    I might be wrong, but it smells as if the RHF has a deal with CDRF...

    I wouldn't be surprised if that is the case... and if that is the case I am not sure it is a good thing.

    Paolo
    Or maybe it could be that Reggie is Canadian and he's being honored on his home turf? Why all the conspiracy? Misalignment is simply an opportunity for communication, not necessarily evil intent.

    Reggie is a good guy. I've followed his work for years, met him and seen him present a couple of times. Karen Miner was the one that first told me he was a man to watch.
    My blog: Living Life at Butt Level

    Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

    "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

    Dawna Markova Author of Open Mind.

  2. #62
    Quote Originally Posted by JenJen View Post
    Or maybe it could be that Reggie is Canadian and he's being honored on his home turf? Why all the conspiracy? Misalignment is simply an opportunity for communication, not necessarily evil intent.

    Reggie is a good guy. I've followed his work for years, met him and seen him present a couple of times. Karen Miner was the one that first told me he was a man to watch.
    Do you say the above because you know or you are just guessing?

    I too think Reggie is a good guy, but he told me in answer to a question I have asked him that his lab does not work on regeneration...
    That's too bad because regeneration is what we need the most and probably it is what we miss the most to cure SCI
    I may have an audio recording of that..

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

  3. #63
    Quote Originally Posted by paolocipolla View Post
    Do you say the above because you know or you are just guessing?

    I too think Reggie is a good guy, but he told me in answer to a question I have asked him that his lab does not work on regeneration...
    That's too bad because regeneration is what we need the most and probably it is what we miss the most to cure SCI
    I may have an audio recording of that..

    Paolo
    I have no inside information if that's what you're asking. But it was my initial reaction to the announcement so I threw it out there. I would be as surprised as anyone to learn your premise was accurate. I would need more understanding to decide if I thought it was a bad thing or a good thing.

    As far as Reggie not working on regeneration, should he be? Is he the right guy to do so? I think the work he is doing is just as important. If [insert your favorite regeneration researcher here] has a eureka moment tomorrow, I don't want the field to then say "hey, we have to figure out how to maximize return in people with SCI, how do we do that?" and then develop a plan and the data that will be used to defend treatment to our insurance companies. I don't want to wait that additional20 or 30 years for research he's doing now.

    These are separate sides of the same problem IMO. I'm ok with them developing concurrently and I believe we should support both aspects: how do we repair the spinal cord... how do we maximize return of recovered function?

    If, while waiting for my magic vial of regenerative goodness, people like Reggie and Susie figure out how to give me more than I've got right now, I'll take it. I'll still want the rest but I'm not willing to forego partial gains while I wait for complete regeneration.
    My blog: Living Life at Butt Level

    Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

    "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

    Dawna Markova Author of Open Mind.

  4. #64
    JenJen, I dont think Paolo is saying shut Edgerton or Harkema down!

    His point (correct me if Im wrong Paolo) is that CDRF is a "one trick pony" and are desperately trying to glamourise that trick for more public support.

  5. #65
    Quote Originally Posted by Fly_Pelican_Fly View Post
    JenJen, I dont think Paolo is saying shut Edgerton or Harkema down!

    His point (correct me if Im wrong Paolo) is that CDRF is a "one trick pony" and are desperately trying to glamourise that trick for more public support.
    Yes I think that is what has happened and this has had also a misleading effect on many who took that for the way to go to cure us if not even for a cure.

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

  6. #66
    Quote Originally Posted by JenJen View Post
    I have no inside information if that's what you're asking. But it was my initial reaction to the announcement so I threw it out there. I would be as surprised as anyone to learn your premise was accurate. I would need more understanding to decide if I thought it was a bad thing or a good thing.

    As far as Reggie not working on regeneration, should he be? Is he the right guy to do so? I think the work he is doing is just as important. If [insert your favorite regeneration researcher here] has a eureka moment tomorrow, I don't want the field to then say "hey, we have to figure out how to maximize return in people with SCI, how do we do that?" and then develop a plan and the data that will be used to defend treatment to our insurance companies. I don't want to wait that additional20 or 30 years for research he's doing now.

    These are separate sides of the same problem IMO. I'm ok with them developing concurrently and I believe we should support both aspects: how do we repair the spinal cord... how do we maximize return of recovered function?

    If, while waiting for my magic vial of regenerative goodness, people like Reggie and Susie figure out how to give me more than I've got right now, I'll take it. I'll still want the rest but I'm not willing to forego partial gains while I wait for complete regeneration.
    Jen,

    you know that we agree that we desagree.

    I am with the ones who believe that the rehab programs that we have are good enough to allow us to recover significant functions once there will be a way to regenerate just in part of the spinal cord, let's say 10%.

    Then if you want "complete regeneration" that is a pretty ambitious goal.
    For sure I am not aginst that.

    About Susie, can you apply to be part her program?
    It would be interesting to see how much you can recover with the same rehab program that has been used for Rob Summers. If you recover something significant I will change my mind.

    Paolo

    Last edited by paolocipolla; 10-23-2012 at 07:56 AM.
    In God we trust; all others bring data. - Edwards Deming

  7. #67
    I was so confused by this Canadian Reeve fundraiser that I called Peter Wilderotter and asked him for the detail He had never heard of this event and even after setting the link, had no information about this event. It is not, as far a I can tell, a Reeve function.
    My blog: Living Life at Butt Level

    Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

    "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

    Dawna Markova Author of Open Mind.

  8. #68
    Senior Member lynnifer's Avatar
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    Someone from RHI reads here ... they attempted answers today to all of the questions.

    It's an honest attempt I think.

    Seems odd that they would have a supporter of the C&D Reeve Foundation speak in Canada ... still perplexed by that.

    Ast I checked, Robarts did basic science but hopefully I'll learn something new.
    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. #69
    Jenn, where was this?

  10. #70

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