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Thread: Let Me Show My Complete Ignorance

  1. #1

    Let Me Show My Complete Ignorance

    As my title suggests I am clearly a layman when it comes to medical research (and almost any other subject as it happens, with the possible exception of blues guitar) but I have for 29 years got really sick of reading that such and such a treatment or the results of trials will be at least 10 to 15 years. Meanwhile one's life drifts by and before you know most of it has gone.

    Now I know it's complicated but in what other field of endeavour are people allowed to set such liquid and movable targets? It would never happen in most businesses and even landing on the moon was achieved in eight years because the president had allowed no room for failure.

    Medical research feels like it's a law unto itself if you're on the receiving end waiting - it might be fascinating for the researchers but is there any urgency?

    And do the paralyzed add to the problem with our own complacancy? Paralyzed people have a pretty good time, is one image I see presented so best not to try anything dangerous and better to concentrate on "serious" conditions. Well I and many others don't enjoy it however much of a success or otherwise one happens to make of it.

    Of course there's always the money angle - sci costs billions, we know that.

  2. #2
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    Quote Originally Posted by Christopher Paddon View Post
    As my title suggests I am clearly a layman when it comes to medical research (and almost any other subject as it happens, with the possible exception of blues guitar) but I have for 29 years got really sick of reading that such and such a treatment or the results of trials will be at least 10 to 15 years. Meanwhile one's life drifts by and before you know most of it has gone.

    Now I know it's complicated but in what other field of endeavour are people allowed to set such liquid and movable targets? It would never happen in most businesses and even landing on the moon was achieved in eight years because the president had allowed no room for failure.

    Medical research feels like it's a law unto itself if you're on the receiving end waiting - it might be fascinating for the researchers but is there any urgency?

    And do the paralyzed add to the problem with our own complacancy? Paralyzed people have a pretty good time, is one image I see presented so best not to try anything dangerous and better to concentrate on "serious" conditions. Well I and many others don't enjoy it however much of a success or otherwise one happens to make of it.

    Of course there's always the money angle - sci costs billions, we know that.
    Hi Christopher,
    Completely agree with this. Our condition wrecks our lives and those of our loved ones. I'm still largely bed confined due to a pressure sore, and am getting a bit stir crazy. There are signs that contributors to the Spinal Injury Association in the UK are getting restive about our allegedly "non-serious" conditional, and making noises. - Not much but it is a start.
    2010 SCINet Clinical Trial Support Squad Member
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  3. #3
    Senior Member alan's Avatar
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    October was Breast Cancer Awareness Month. Everybody and their grandmother was wearing pink and working to raise money for breast cancer research (including some scammers, unfortunately.) Obviously, breast cancer affects far more people than SCI, and can be fatal, so it warrants all that attention, but why can't there be an SCI Awareness Week, and a color to represent SCI? Right now, Eric LeGrand is in the news, but that won't last, and some other football player eventually will go through the same thing. Meanwhile, he'll likely stay paralyzed to some extent, even if he does (hopefully) recover some function, and will have to deal with all the fun bladder, bowel, skin, and bone issues we all face.
    Alan

    Proofread carefully to see if you any words out.

  4. #4
    I dont think awareness about SCI itself is needed but rather awareness about where the field of research is and what is needed to move forward. The basic science is progressing at a faster rate than the translational and clinical studies. We need more investment in translational and clinical studies!!!!

    Unless a savvy, amibitious biotech comes along to take the hit, translational and clinical studies for promising therapies are left stuck in the "valley of death". Even if a biotech (such as Invivo Therapeutics, Stem Cells Inc) takes the baton they face a massive risk of burning out prior/during a Phase I/II trial.

    Unless the Govt decide to step in (which I doubt will happen) wouldnt it be great to see SCI'd entrepeneurs setting up not-for-profits with smart philanthropic money to translate more promising research rather than relying on a profit-driven medical industry?

    Philanthropists are all looking to 'invest' in vehicles that see their money working rather than being squandered by charitable trusts. So why not?

  5. #5
    What i would like to see as well is if any munbers of the paraolympic teams in the world that is giving any interviews and competing in it . If they could wear a badge or some thing to push for trials to begin quicker . I just hope the trials is well under way by that time . but still that dose not stop any one mention now in their interview
    it just a idea . Maybe this has happened be four But i think we should try to push it
    so if you know any one
    Last edited by skeaman; 11-01-2011 at 03:23 PM.
    AS I SIT HERE IN MY CHAIR . I LOOK OUT UPON THE GROUND .I WONDER WILL I EVER GET UP AND WALK A ROUND ??


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  6. #6
    Quote Originally Posted by skeaman View Post
    What i would like to see as well is if any munbers of the paraolympic teams in the world that is giving any interviews and competing in it . If they could wear a badge or some thing to push for trials to begin quicker . I just hope the trials is well under way by that time . but still that dose not stop any one mention now in their interview
    it just a idea . Maybe this has happened be four But i think we should try to push it
    so if you know any one
    Im not sure paralympians are the best advocates for Cure. Happy to be proven wrong though.

  7. #7
    paraolympians are strong minded people that turned lemmons into lemmonade everyone else are lazy losers that just dont try hard enough. god bless those those gimps that climb mountains, can still kill unarmed animals with powerful weapons, roll across countries etc............not me i'm too lazy and jesus apparently hates me!
    "I'm manic as hell-
    But I'm goin' strong-
    Left my meds on the sink again-
    My head will be racing by lunchtime"

    <----Scott Weiland---->

  8. #8
    Senior Member lunasicc42's Avatar
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    @Alan: isn't September already a designated Spinal cord injury awareness month...? albeit little known
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


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  9. #9
    Quote Originally Posted by Fly_Pelican_Fly View Post
    Im not sure paralympians are the best advocates for Cure. Happy to be proven wrong though.

    For me, I spent my time in wheelchair sports as a way of staying in shape for the cure. When I played , University of British Columbia and other researchers came to the athletes for many of the studies they were doing.

    38 years later, I still use cure as a one of my motivators to stay in shape. I spent 30 years as an active athlete and am still a motivational speaker. Cure is a topic I always bring to the forefront. It's important that we maximize our potential if it comes and strong enough to wheel our way thru life if it doesn't.

    I empathize with your restlessness, a way I got thru it was to remind myself that it is one day closer and what am I doing to be ready for it.

  10. #10
    We talked about much of this at the W2W conference last month. So many researchers doing wonderful work, trials are going on, but still so many obstacles when moving from "Bench to Bedside". A woman from the FDA spoke to us, she talked about back in the 80s when the AIDS patient advocates made such a noise, nobody got more attention then that group. Of course back then AIDS was a death sentence. They did it well, actually changed some things internally at the FDA because of their strong advocacy efforts. They were a complete nuisance, relentless. I love the idea of paralympics wearing a badge to promote a cure. How can we make that happen? Ideas?

    But we still have to build a relationship with the FDA, I think that is paramount to the success of these trials. Nobody knows us, we dont have a presence there. We can all support the Regenerative Medicine Act, that calls for a national strategy around these efforts.

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