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Thread: Let Me Show My Complete Ignorance

  1. #21
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    I think it all comes down to incentive. We need capital to move forward as fast as we can with research and development. In order to attract capital some sort of incentive is required. There is simply not enough sci gimps to make a substantial profit from selling "a cure". Not only that it would be difficult to develop a business model that can sustain itself or grow. We all know how expensive research is not to mention trials and FDA process. Theres is also an argument that some companies have a lot of capital invested into "care industry". We are talking insane amounts of money. Theres a whole market for things we gimps need for every day life.

    That being said I think chances for cure are increasing exponentially over time. Seems like an obvious statement but there are factors we need to consider. They will increase not only because of progress in medical science but also because of factors like economic globalization and population growth. Imagine a world where countries like China, India, Brazil , Mexico or even Turkey are as rich as United states and the rest of western eu. That gives us so much more opportunities to gather capital, it gives people with sci in those countries chance to be heard. The population of people with SCI is also on the rise so in a long run that will help with so needed incentive.

    I understand the frustration of old timers as they were teased with this idea of freedom.
    Year after year hoping for possible cure which ultimately never came. As a next generation I hope I wont share your faith. I'm 26 at the moment and I see bright future ahead of me. It might sound like a clichĂ© for those that experienced life with SCI but I truly believe we are closer then we might think. We can see a taste of it looking at China right now. It was estimated in 2008 that China’s government currently manages between $2.3 and $2.4 trillion in foreign assets. Just an idea of whats to come from developing countries.

    Those are amazing times we live in. The big question is what can we do to help ourselves? It might sound selfish but if we wont do it for ourselves nobody else will do it for us. I dont have an answer to the big question as it is not something that is easily figured out but I think we would be better of spending our time on this planet trying to figure out how to make our life better and more productive then complaining about what wasnt done for us.
    It could be that now its time for my generation to grab the stick and keep it moving but without your experience we will have to take a step back first. So lead me mr. Oldtimer. Tell me what you learned over the course of your life other then not to trust what they promise.
    Last edited by BSgimp; 11-01-2011 at 10:40 PM.

  2. #22
    Quote Originally Posted by Christopher Paddon View Post
    at first I was shocked but then I sensed the sarcasm....
    lots and lots and then more and more sarcasm. every injury is different. not everyone can be a paraolympian! we have to be careful who we use as a poster child or who we as an example to represent a cause. C Reeve was excellent and he did allot for us. he talked about the ugly side of sci, ie... loss of movement, bowel and bladder, inability to hug his growing children, inability to make love to his wife etc. i can get up and walk around, my home doesnt have ANY type of modifications, i dress and shower like before my accident and its not because i work harder than someone else with a c4-c5 injury. i am able to do allot because my injury is incomplete. when i was in rehab there was this mexican immigrant whose family would shame him in front of me because he was completly paralyzed except for some triceps. this poor guys sister and brother would say he wasnt working as hard as me! that he didnt want to get better like i did. very sad.
    "I'm manic as hell-
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  3. #23
    Senior Member lynnifer's Avatar
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    I think we need more of 'us' as politicians in places of power and decision making.
    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

  4. #24
    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.
    From my perspective I can do more than just keep fit and be ready waiting just in case. I am doing that now. So no need for the empathy my friend.

    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.
    Of course more basic research is needed. Nobody claims to have all the answers about the CNS. We may never have all the answers. However, there is so much data in some lines of research that provide compelling evidence that a human trial is warranted. For example, are you saying that it is inhumane to use a very well researched enzyme such as chondroitinase to potentially restore breathing? Wouldnt a vent dependent quad want to take the risk in this circumstance? When you strip things down, human clinical trials are experiments after all. It will never be perfect. As outcome measures become more complex and regulation becomes more rigorous to these outcome measures - will we get to a point whereby no therapies will ever make it through the pipeline? scientific rigour Vs urgency will always be a tough balancing act.

    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... ;-)
    That is derogatory to the Chinese. Not living in a world that is dictated by the threat of litigation does not mean that human life is undervalued.

    The big question is what can we do to help ourselves? It might sound selfish but if we wont do it for ourselves nobody else will do it for us. I dont have an answer to the big question as it is not something that is easily figured out but I think we would be better of spending our time on this planet trying to figure out how to make our life better and more productive then complaining about what wasnt done for us.
    Totally agree with BSGimp there.

  5. #25
    Quote Originally Posted by alan View Post
    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.
    In an effort to raise awareness about the critical need for better treatments and preventive measures, September has been designated National Spinal Cord Injury Awareness Month by the U.S. Senate, the result of a resolution co-sponsored by Sens. Marco Rubio (R-FL) and Bill Nelson (D-FL). To bolster the resolution’s message, we are launching an awareness campaign lasting the entire month of September.
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  6. #26
    Quote Originally Posted by Christopher Paddon View Post
    Do you think Wise is mistaken about cord blood/ lithium combination because we know so little about it? There is no chnce of success?
    I do not think he is mistaken, in fact I think he has some very good data that it could be an improvement in the short term-but in 5-10 years? Nobody knows. I also think he is taking a big risk, but he and everyone involved know that (one more reason they do it in China), and we all hope it pays off. I think such risks are going to be necessary to get the data we need.

    Quote Originally Posted by Fly_Pelican_Fly View Post
    Of course more basic research is needed. Nobody claims to have all the answers about the CNS. We may never have all the answers. However, there is so much data in some lines of research that provide compelling evidence that a human trial is warranted.
    sorry, I was pointing out that even at the basic science level it is hard to get funding for this... it is much more difficult to convince Big Money that you have something worth risking lives over. I'm not apposed to human trials- in fact, I would much rather do experiments on humans than rats- but I'm never going to get funding for that... LOL


    That is derogatory to the Chinese. Not living in a world that is dictated by the threat of litigation does not mean that human life is undervalued.
    Sorry for the misunderstanding- I'm talking about the China government and legal system, not individuals- I work with lots of Chinese, they are wonderful- their government however, does not have a stellar track record for basic Human Rights.
    Last edited by dr.zapp; 11-02-2011 at 06:13 PM.

  7. #27
    Quote Originally Posted by Fly_Pelican_Fly View Post
    For example, are you saying that it is inhumane to use a very well researched enzyme such as chondroitinase to potentially restore breathing?
    in the context of SCI, chondroitinase is not well-researched- only 105 papers related to it. http://www.ncbi.nlm.nih.gov/pubmed?t...0spinal%20cord
    True, if you do a general search, you get more- 1730 publications- but not what you would see from a "very well researched enzyme" like say, VEGF (37,206), p21 (24,462) or the mother of all cancer genes, p53 (60,191). And we are still learning about VEGF... (one of my specialties) For chondroitinase, I think we are just scratching the surface. Looks very promising, however.

  8. #28
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    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.
    Excellent points, but...

    Cancer is awful; like most people I have lost relatives and friends from this. BUT, people do recover from cancer, and total permanent remission does happen. No therapy known can boast this for SCI, MS and all the other wretched neural afflictions, and yes, most of these others are always terminal.

    True, neural treatments are immensely complex and expensive. However, I read on the web that zone 51 "evaporates" $billions annually, and that even the president is not permitted to know exactly what is being done there. Surely it can't be still the nasty ole Russians, (2 decades after the Cold War) that drive this effort.

    The truth is that many of us are getting a little fed up with problems - with all the disparate companies, service, research facilities globally, we want solutions, not just for SCI but Alzheimers, TM and the rest.
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  9. #29
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    Quote Originally Posted by SharonD View Post
    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!
    For a cameraphobic, it's a pretty cute picture!
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  10. #30
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    Quote Originally Posted by Fly_Pelican_Fly View Post
    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?
    The charity debate is an important issue, i.e. exactly what does happen to all the hard earned cash that benefactors put up? Recently I saw a promotion where it was said that 45% of the money raised went to the coal face - so to speak. My immediate reaction was where the hell does the other 55% go?
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