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  • 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
    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
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

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    • #3
      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.

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      • #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?

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        • #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, 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 ??


          http://justadollarplease.org

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          • #6
            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.

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            • #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---->

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              • #8
                @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!!!! "


                2010 SCINet Clinical Trial Support Squad Member
                Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

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                • #9
                  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.

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                  • #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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                    • #11
                      haha I forgot I took this picture of myself at work (in the bathroom) the other day and added to my profile. I hate cameras and pictures!

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                      • #12
                        I'm a scientist- in cancer research (cause that's where the money is right now...) I'm even in a Neurosurgery department, I was operated on by my fellow department surgeons 4 years ago when I was injured. I know a bit about this. I have been trying to talk our dept. head into letting me change focus from cancer to stem cells and SCI.. but so far we have not gotten any grants funded for it. I think we need to make more noise, raise awareness etc... but since it's not viewed as a death sentence like cancer, it will never have the same incentive for agencies who fund these things (NIH) What would help is something like the National Cancer Institute, but for SCI, and I think that is going to happen soon.
                        However, to comment on the experiments required for this kind of work- they are incredibly difficult, amazingly complex and prohibitively expensive. I don't think it is possible to impress on the minds of a public raised on hollywood movies where anything is possible in under 2 hours, how much detail goes into even the simplest experiment involving a live SCI model. We also know so little about what is actually going on, that we can never be sure of the results. We are still only inferring and guessing- and then you want to put human lives on the line when all we have is an educated guess? I get the impression from reading things here that people think The Scientists know so much about how this works.. WE DON'T!!! We don't even know enough to know what we don't know- which is a very dangerous place to be in and then start messing around with humans. I applaud people like Wise Young who can find the right situation of funding, facilities and educated guesses to pull it all together for a human trial, but he had to go to China to do it, where honestly, they don't have such a high regard for human life... mainly because they don't get sued and put in jail if someone dies... ;-) In cancer research, it's a completely different mind set- it's fairly easy to try something new because the person is going to die from cancer anyway- nothing to lose... SCI does not have that same finality... much more of a gray area ethically.

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                        • #13
                          Originally posted by ineedmyelin View Post
                          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!
                          at first I was shocked but then I sensed the sarcasm....

                          Comment


                          • #14
                            Wise Young seems to have used his nouse and influence to get clinical trial networks started with the aim of moving treatments to the bedside as quickly as possible. He did this because he could see research work stuck in the lab and reaching people. Is he our best hope?

                            Should J Silver's chondroitinaise/ nerve graft be tested in ChinaSCINet as a way of getting that to people asap, if it works?

                            What other organizations are most likely to help us? Geron? Miami Project? StemCells Inc?

                            Comment


                            • #15
                              Originally posted by Patrick Madsen View Post
                              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.
                              I never knew you were such a strong cure advocate - for some reason I thought you weren't. What's a good way I could get in some sort of shape? - I've got a bit overweight and it kills me because I was a really keen runner up till my accident of course

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