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Thread: New treatment offers better hopes for victims of spinal injuries

  1. #61
    Manouli, thanks for the refreshing response. Many of us belive, have to belive, that anew dawn is emerging. We got to stay on shape the best we can and look for the right opportunity,(clinial trial) to get involved in. I hope, and think Wise understands thhat we are anxioulsly waiting for his trials to start and to show some light. Ler's keep are chins up and support eachother and each other's dream.

    T.J.

  2. #62
    Wise, your explanation is acceptable and understood; we are waiting for clinical trials and will TRY to do what we can to support. Sitting in these chairs day after day create disbelif that something is really going to happen. Your forum and replies generate hope and confidence to the contrary. If there is something we can do, contact some group or entiety, or just voice our hope; let us know.

    Tony

  3. #63
    Wise, the waiting and beliving is very difficult. Reading that a facility is being built for stem cell studies, reading a rat study that cautions that more and more tesing is needed, and watching for a clincal trial results is very difficult. Everyone of us experiences this in our own way everyday. A clear path forward would allow a focus of attention, hope and trust.

    Tony

  4. #64

    Smile

    Quote Originally Posted by keeping on View Post
    Manouli, thanks for the refreshing response. Many of us belive, have to belive, that anew dawn is emerging. We got to stay on shape the best we can and look for the right opportunity,(clinial trial) to get involved in. I hope, and think Wise understands thhat we are anxioulsly waiting for his trials to start and to show some light. Ler's keep are chins up and support eachother and each other's dream.

    T.J.
    Hi my friend! Yeah, I agree with you that we must be in good shape. Don't worry, Dr. Young sleeps and dreams about the cure every night, we are fortunate to have him, and he knows our pain. It will be great if he is the first doctor who makes the first spinal cord injury victim stand on his feet again after 20 30 years of paralysis.

    be good, manouli.
    Last edited by manouli; 03-09-2010 at 07:23 PM.

  5. #65
    dr.young,
    i could not find it on youtube,i wanted to send it to lief!

  6. #66
    Senior Member
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    Talking Scientists singing

    Quote Originally Posted by jim sampson View Post
    dr.young,
    i could not find it on youtube,i wanted to send it to lief!


    Do you want to hear more?

  7. #67
    you are the man leif.

  8. #68
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    Quote Originally Posted by Wise Young View Post
    Agnes, thanks.

    DA is correct in the sense that if more people in the community were to give money to research, the scientists would feel more accountable to them. For example, many groups that have received money from families with spinal cord injury do feel very accountable to their donors. For example, I know that the people at the Miami Project feel very accountable. I certainly feel very accountable.

    However, most scientists do not feel accountable because they don't get their funding from the community. Most scientists get their money from the NIH and the spinal cord injury community has done relatively little to support increased NIH funding. Many scientists study spinal cord injury because they consider it to be an interesting problem and they want to be the first to show that their therapy will regenerate the spinal cord.

    Moving therapies from laboratory to clinical trial and thus to clinical practice is usually not done by scientists. This is usually done by companies, advocacy groups, and doctors. Companies of course do it for profit. An increasing number of companies are beginning to support clinical trials for spinal cord injury therapies. In order a company to support clinical trials of a product, that company must be able to profit from the product. The treatment must be patented or patentable.

    Advocacy groups can also do it. Neurogel is a clear example of a treatment that owes its survival to an advocacy group. A company originally made this material but died an economic death. Patients and families organized to keep the manufacturing of the material alive and managed to interest Dr. Sykova in testing the material in animals. She is now very interested in taking it to clinical trial in Czechoslovakia and thus this group is raising the millions of Euros that are necessary.

    Please understand that this is just the beginning of the clinical trial process. Many millions of euros are necessary to move this through the gauntlet of clinical trials in Europe and the United States to prove efficacy and to obtain approval. The phase 1 trials will only establish safety and feasibility. Phase 2 trials are necessary to optimize the treatment. Phase 3 trials must be done to establish efficacy. I applaud the neurogel association for doing this.

    Doctors can also do clinical trials. Most doctors don't have the time or the capability to organize clinical trials and they must do so in partnership with scientists or companies that have a treatment. Here again, there must be a champion of the therapy and some source of funding for the clinical trials. Finally, the doctor who wants to do this must get together other centers to do the trials with him or her. Usually, single center trials are not acceptable for Phase III.

    One way of shortcutting the process is to form clinical trial networks, i.e. collections of centers that have agreed to collaborate together or clinical trials, that have trained to do the trials, and have the infrastructure to do the trials efficiently and rigorously. The National Institutes of Health has long funded clinical trial networks for many disease conditions, including cancer. Rather than waiting for NIH, however, we have developed two networks with private funding: ChinaSCINet and SCINetUSA. Together these two networks have 32 spinal cord injury centers in China and U.S.

    In my opinion, DA is putting the fire on the wrong feet. It may make scientists uncomfortable but they are not the ones who will be taking the therapies to trial.

    Wise.
    Dr. Young,

    I just saw your other post. To see the very best scientists join forces and collaborate is my dream as a patient of course. I am really excited: your expertise and involvement will be invaluable.

    We may have to wait a few years for an effective therapy to get FDA approval but if we don't start soon, the wait will be even longer...some of us will die in a wheelchair. If a therapy "works", centers will open overseas, we could also lobby to fasttrack FDA approval etc...

    Neurogel en Marche is willing to share its therapy with anyone who is willing to help conduct a human trial because for most of us, time is of the essence. We are not interested in the marketing aspect of the product. We only want our members to have quick access to the therapy. The problemat this point is that the Association is NOT raising millions of euros because it relies solely on donations... so far anyway. We need 1 million euros, which is a drop in the bucket, given what is at stake. How much is a cure worth? If 1,000 handicapped people gave $ 1,000, our problem would be solved. I would gladly give a couple of thousands to reach our goal.

    Again, thank you for considering experiments with Neurogel. I am sure Prs. Sykova,Gorio and Decherchi will enjoy working with you. I am convinced that your combined efforts will bring us closer to our common goal. This is great news for the SCI community!

    PS: Are you going to contact Pierre Rondio, or should he contact you?
    Last edited by gretchen; 03-10-2010 at 11:32 AM.
    gretchen 1

  9. #69
    hang on guys , guys get real , there is no cure 4 the next 5 years

  10. #70
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    Quote Originally Posted by Wise Young View Post
    Please don't give up. What you are seeing here is the consequence of many people expressing their views to each other, stimulated by the announcement of a therapy that offers hope. If you would like, I can clear out the discussion and leave the topic as it was before. I think that this topic is driving traffic to this topic and you should keep posting information.

    Wise.
    Please do! I realize some people need to vent their fears and frustrations online ( I assume they need to be reassured,) but it is getting ridiculous. Looking forward to making headway with your help, Dr. Young. : )
    gretchen 1

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