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Thread: Let Me Show My Complete Ignorance

  1. #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!

  2. #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.

  3. #13
    Quote 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....

  4. #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?

  5. #15
    Quote 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

  6. #16
    Thanks, Dr. Z, that was a really good explanation of the research hoops you scientists go thru.

    LOL Ineedmyelin. I never thought of them as lazy losers, more like just those who pace themselves trhough life.

  7. #17
    Quote Originally Posted by dr.zapp View Post
    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.
    Do you think Wise is mistaken about cord blood/ lithium combination because we know so little about it? There is no chnce of success?

  8. #18
    Quote Originally Posted by Christopher Paddon View Post
    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
    You bet I am Chris; I'm for anything that will progress the developement of a solution.

    I probably don't seem so fervent because of the reasons Dr. Z stated earlier. Care is important as well til we get to the stage of ,as Z stated, more than guessing.

    It's not so important for myself personally, but I'd sure like to see more progress for those that followed.

    As Z stated, more publicity is what's needed to gain the funding interests to swing our way.

    We oldsters had our fight in the '70 and '80's for the thingsd we take for granted now. I feel, it''s the newer generations role to take what we started to the next level.

  9. #19
    Quote Originally Posted by SharonD View Post
    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.
    were all screwed just get used to it in 100 years we will still be hearing another 10
    And as far as cancer killing a person SCI kills you but your physical boby lives on in a hell on earth scenerio

  10. #20
    Quote Originally Posted by Incoquad103006 View Post
    were all screwed just get used to it in 100 years we will still be hearing another 10
    And as far as cancer killing a person SCI kills you but your physical boby lives on in a hell on earth scenerio
    Wow - I hope not -

    I do agree that for it not to be treated with the same urgency as a fatal disease is unfair because there is so much suffering - perhaps able bodied people can't empathize enough

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