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    #46
    bump

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      #47
      a thought from the darkside

      people get more interested in research when it directly effects them.

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        #48
        Wise

        Your comment that the obstacles to a cure are not scientific but sociological and economic, could imply that the science of how to cure paralysis is already known but there isn't the cash or will to apply it.

        Is that correct or is there in fact still a lot that is unknown?

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          #49
          Chris2,

          Obviously we have not discovered or know all there is to know about spinal cord injury and regeneration. There is a need for a continuing investment into both scientific and clinical research to understand and develop therapies. Right now, however, the bottleneck is at the clinical trial stage. We do not have an efficient clinical trial infrastructure. To move therapies quickly to people, establishing such a structure must be a high priority.

          Regenerating and repairing the central nervous system is possibly the most challenging scientific goal ever undertaken. In my opinion, regeneration of the central nervous system is more difficult than developing effective vaccines of AIDS, more complicated than transplanting the heart, and more ambitious than building the nuclear bomb.

          Ability to regenerate the brain and spinal cord will have greater impact on more people than almost other achievement of humankind. Our current inability to do so is responsible for trillion dollars of medical care and other support that world currently spends on neurological disabilities. The U.S. government spends less than $100 million per year on research that almost everybody agrees will provide curative therapies for brain and spinal cord injury.

          Because NIH funding is based on successful competition for grants, the best way to increase NIH funding of spinal cord injury research is to boost the quality and number of spinal cord injury researchers. In my opinion, the way to accelerate movement of therapies to clinical application is to establish a clinical trial infrastructure that allows promising therapies to be taken rapidly and efficiently to clinical trial.

          Wise.

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            #50
            Nevertheless:

            inspite of the vast complexity of the problem, some treatments for chronic SCI are likely to become available in the near future, is that not so?

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              #51
              Chris2, yes. As you know, we already have some therapies that are restoring some function to some people (4-AP, supported ambulation training). More are being tested (OEG transplants, alternating current, AIT-082, activated macrophages, etc.). These therapies may not apply to everybody but the second generation therapies should restore more function to more people. Dozens of potential third generation therapies are being discussed. We must ensure that the most promising therapies go to clinical trial and that the pipeline of therapies remain full.

              We must try to avoid this "all-or-none" roller coaster ride approach to spinal cord injury therapies. Many people on these forums are saying that either nothing is happening (which is not true) or that we have the cure now (which is also not true). Some are giving up because some person says that it may take 20 years. Others are breathlessly claiming that we have the cure now and that it is all the scientists' fault for not applying the cure right now.

              There is simply not enough information right now to predict the future. I believe that there will be therapies that will restore function in chronic spinal cord injury. When this will occur depends on hard work, adequate funding, and some luck. I know that people are working hard but that funding is inadequate. I also know that there are now therapies being considered that I would not, indeed could not, have predicted five years ago.

              Wise.

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                #52
                Wise,

                I believe more media attention concerning spinal cord attention would help bring about more awareness towards cure research. Are there any organizations that might have monies budgeted towards advertising , tv commercials, newspaper articles. CR has brought to light the most media attention concerning sci than ever since his injury. On the tv show "ED" there is a new character, a black guy that is paraplegic (I assume he really is, but don't know for sure). If he really is sci injured, he would be good for commercials. If the tv networks could help, that would be a great boost. You mentioned a cure would be the greatest achievement and have a great impact on a tremendous amount of people. Knowing that, wouldn't researchers want or hope to be the one or group that comes up with the cure, and not be willing to share their information regarding their discoveries. It gets complicated, when big business as drug companies get involved, and who stands to profit the most from the cure. God, I hope it all works out. Today's world is so much different, it isn't like when the polio vaccine was discovered or anything. There is alot of dog eat dog in this world or at least in the US, so I hope researchers have worked this all out. Dr. Young, you are the most unselfish advocate for spinal cord injury in the world, and probably the most knowledgeable and freely share what you know with the community. If it weren't for you I'd be real skeptical about ever hoping for a therapy. So, what's in for you ? Just kiddin, Doc.

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                  #53
                  Jack, thanks. Most scientists that I know in the spinal cord injury field are very collaborative and freely share information that they have. We are much more sharing in our field than most others. In part, this is because the scientists want to see a cure as much as the SCI community. There is of course natural competition amongst the scientists for credit but I don't think that this has been a significant barrier to progress.

                  What is in it for me? Our Center is devoted to goal of getting more therapies into clinical trial. As you know, I push for therapies whether they come from our Center or not. I would dearly love not to have to do spinal cord injury research for the rest of my career. Having spent already nearly 25 years of my life on spinal cord injury research, it would be nice to move on to something else. But, I can't until I am convinced that I have done all that I can to make it happen and as soon as possible.

                  We must remember also that our work is not done with the clinical trials. The therapies must be optimized and made available to people with spinal cord injury. It would be an incredible shame if a cure were to discovered and it is available only to a small minority of the community due to expense or inavailability of the therapy. For example, if the therapy turns out to be a particular surgery that only one surgeon can do, this would not be good. Likewise, if the therapies involve stem cells that are in limited supply or the procedure is so expensive that it would not be available to everybody, that would be unacceptable.

                  Wise.

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                  • #54
                    Eli on ED

                    Bareback Jack,

                    I was just going to let you know that Eli, the character on Ed, is an SCI. Max posted an article about it not too long ago, but I did a search and couldn't find it. He was an actor before he was injured as well - he was a teacher in the movie 10 Things I Hate About You.

                    Chris

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                      #55
                      Da Cure

                      I understand the lack of being able to predict when, but taking into account your recent travels, can you predict where a cure we be available to the masses first?

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                        #56
                        i saw a story last night about the nih funding a $147,000 study of women watching porn movies. but there continue to be no money for sci.

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                          #57
                          Where a "cure for the masses" will appear? If a verifiable "cure" were to be discovered in some part of the world, it should disseminate rapidly around the world unless it utilized some restricted material (such as embryonic stem cells) or involves a difficult surgical technique that requires training. All this, however, is what one would expect from a rational world.

                          In the early 1990's, I thought that our discovery that methylprednisolone is neuroprotective would lead to rapid application of the treatment worldwide. It turned out that not everybody had heard or believed in our results. It took several years before methylprednisolone became a standard therapy in the U.S. and it is still not given uniformly around the world.

                          So, reports of a "cure" may not be believed by the medical establishment in various countries and implementation may take a number of years, particularly if the treatment involves specialized surgical, factors, or cells. Clinical trials must be carried out in each of the major regions and countries before the treatment will be "available for the masses".

                          This is of course one of the reasons why it is important for the clinicians in the field of spinal cord injury to communicate with each other and be prepared to implement treatments rapidly, as soon as convincing evidence becomes available. It is the reason why a good clinical trial is essential from the beginning. A badly run clinical trial may lead to delays or demise of a treatment.

                          Wise.

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                            #58
                            Daryl "Chill" Mitchell. Yes, he's a fairly new addition to the SCI community and used to be on Veronica's Closet and the John LaRouquette Shows as an AB.

                            Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."
                            Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                            Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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                              #59
                              2003

                              It seems that a cure "available to the masses", as Schmeky put it, is still a long way off especially if treatments don't spread rapidly round the world.

                              Hopefully something as dramatic as a chronic 'plegic' being cured wouldn't be easily ignored.

                              I am really hoping for some genuinely Miraculous news in 2003 for my own sake and everyone here with a SCI. Kawaguchi's results seem very hopeful and Dr Lima - let's hope things don't just fizzle out.

                              I have been in a chair since 1982 and have had my hopes raised many times by discoveries made throughtout the years. Was it Christopher Reeve who said "I wish I were a rat"?

                              [This message was edited by Chris2 on Dec 28, 2002 at 09:57 PM.]

                              [This message was edited by Chris2 on Dec 28, 2002 at 09:58 PM.]

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                                #60
                                This is of course one of the reasons why it is important for the clinicians in the field of spinal cord injury to communicate with each other and be prepared to implement treatments rapidly, as soon as convincing evidence becomes available. It is the reason why a good clinical trial is essential from the beginning. A badly run clinical trial may lead to delays or demise of a treatment
                                Wise, could you elaborate on the differences between clinicians and sci researchers, if there is one. I'm a little confused when you use the term clinicians. Do researchers do the research, then turn everthing over to a team of clinicians when a trial happens? I guess I mean is the work that sci researchers and clinicians do mutually exclusive, at least in most cases?
                                Thanks
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