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

  1. #21
    I say they should sell the therapy to the public rather than spend all that money and time with trials. Yea they'll be called "sharletons" and "crooks" but theres no better more efficient way of getting a procedure to the people than selling it on the free market. I dont know why people are so outraged by the thought. its like they think the current status quo is working so efficiently. I say sell it first then go to trial after your confident that it works and you have the procedure perfected. Hell, you can use the profits from selling the procedure to pay for the trials... Oh, how immoral and unethical it is to help people who suffer now... what a terrible thought...

    DA is right, these High estemed researchers and scientists are more concerned with there careers and impressing there colleagues than actually helping people. they know the minute they sell a procedure to the public there image will be tainted. anytime someone offers a procedure to the public they are immediately attacked by the research community who are currently doing nothing becuase they can't "fund there trials"... its easy to wait for things to happen when your not the one in the chair everyday but what the sci needs is people who are willing to make things happen. you probably gonna need to break a few ethics to make things happen..

  2. #22
    Senior Member DA's Avatar
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    Quote Originally Posted by 0xSquidy View Post
    I totally agree with you. That's why i want this community to help each other in that achievement. If we dont care or don't make efforts to get to that, who's gonna do it? No one. So let's move.
    the first thing we need to do is this; every time a significant breakthrough happens, we should say yeaaaa, great, super breakthrough, high fives all around...then say put to it use for the people, NOW. demand that it is brought to bedside. demand that we get access to it. chances are the money used to fund the research was from the people therefore the breakthrough belongs to us.

    this forum was much different 12 years ago. dr young reminded me of how members were filing lawsuits to get those breakthrough released.

  3. #23
    Quote Originally Posted by DA View Post
    this forum was much different 12 years ago. dr young reminded me of how members were filing lawsuits to get those breakthrough released.
    Wow, How did that turn out?

    Instead of demanding it we should find doctors willing to steal it. Fuck em, they aint doing nothing with it anyway. get as many details as we can about what they use to heal rats and steal it and actually apply it to people that can use it. it really will take an extreme act to show the community how much we want this.

    The status quo is not and will not work....
    Last edited by Eric.S; 03-07-2010 at 11:52 PM.

  4. #24
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    It seems to me you are ready to take an active part in your recovery! Check www.neurogelenmarche.org. The patent for Neurogel belongs to the members of Neurogel en Marche Association, e.g. to us, the patients who have chosen to try to promote this therapy and to volunteer for the trials. The surgical procedures are not the most expensive part, but the therapy involves years of intense physical therapy - particularly for quadriplegic patients - to retrain the brain. The lesion itself may be healed but the pathways will have to be found again (in layman terms - this is what I understand.)

    The Association needs 1 million euros to allow Pr. Sykova to complete her pre-clinical work to make sure we have the best combination therapy and to conduct the first human trial... in 2010 if we can raise funding: if 100 of us gave $10,000, if 1,000 SCI patients gave $1,000, if 10,000 patients gave $ 100, the human trial could take place... is anybody game? $ 10,000 might be hard for a lot of people but $ 1,000 should be feasible, considering what is at stake.... remember the ball is in your hands, in our hands because we are all in this together. Neurogel can be your therapy if you choose to join the Association and get involved, as a volunteer patient or in any other capacity.
    gretchen 1

  5. #25
    Quote Originally Posted by gretchen View Post
    It seems to me you are ready to take an active part in your recovery! Check www.neurogelenmarche.org. The patent for Neurogel belongs to the members of Neurogel en Marche Association, e.g. to us, the patients who have chosen to try to promote this therapy and to volunteer for the trials. The surgical procedures are not the most expensive part, but the therapy involves years of intense physical therapy - particularly for quadriplegic patients - to retrain the brain. The lesion itself may be healed but the pathways will have to be found again (in layman terms - this is what I understand.)

    The Association needs 1 million euros to allow Pr. Sykova to complete her pre-clinical work to make sure we have the best combination therapy and to conduct the first human trial... in 2010 if we can raise funding: if 100 of us gave $10,000, if 1,000 SCI patients gave $1,000, if 10,000 patients gave $ 100, the human trial could take place... is anybody game? $ 10,000 might be hard for a lot of people but $ 1,000 should be feasible, considering what is at stake.... remember the ball is in your hands, in our hands because we are all in this together. Neurogel can be your therapy if you choose to join the Association and get involved, as a volunteer patient or in any other capacity.
    Sounds nice if assurances can be made that the money will actually produce results. If you raise the money will people be receiving the therapy in a timely fashion? no funding black hole....

  6. #26
    Omnescient, I agree; we nedd to hold these announcements to accountability. When they come out with an annoucement for rat cures, we need to hold them accountable.

  7. #27
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    100% of the money goes to the research and project. You can contact Jean-Luc Gay for details... it is all very simple and transparent actually. Pr. Sykova believes the therapy is effective; she needs 250,000 euros to make sure we have the best combination of EPO, progesterone and possibly adult stem cells to inject after the gel has been implanted (her estimate is posted on line I believe). She is ready to begin work as soon as she gets the necessary funds. Dr. Reis is preparing the operating protocol, so the human trial could begin very soon. (850 000 euros would cover ten surgical procedures + post-op + physical therapy)
    gretchen 1

  8. #28
    Quote Originally Posted by DA View Post
    the first thing we need to do is this; every time a significant breakthrough happens, we should say yeaaaa, great, super breakthrough, high fives all around...then say put to it use for the people, NOW. demand that it is brought to bedside. demand that we get access to it. chances are the money used to fund the research was from the people therefore the breakthrough belongs to us.

    this forum was much different 12 years ago. dr young reminded me of how members were filing lawsuits to get those breakthrough released.
    DA,

    Who are you going to make this demand to? The scientists? As I have now said hundreds of times now, scientists are not the ones who take therapies to clinical trials. If you want to do what you suggest, you need to do what www.neurogelenmarche.org has done with neurogel. You need to come up with the organization, the money, and the work that is necessary to move a therapy from laboratory to clinical trial.

    Let me clarify the lawsuit situation. One person (not "members") with spinal cord injury (Will Amber) had threatened to file a lawsuit (I don't know whether it was filed) to get the University of California at San Diego to take the therapy that Dr. Mark Tuszynski had developed and apply it to himself (Will Amber). Dr. Tuszynski was not convinced that the therapy was ready for clinical application (he had done work in 1995 reporting that fibroblasts that had been transfected with viruses to express neurotrophins stimulated regeneration in the spinal cord). Perhaps Will Amber should himself describe the situation.To my knowledge, the treatment was never applied.

    Wise.
    Last edited by Wise Young; 03-08-2010 at 11:29 AM. Reason: added word (highlighted in red)

  9. #29
    Senior Member DA's Avatar
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    Quote Originally Posted by Eric.S View Post
    Wow, How did that turn out?

    Instead of demanding it we should find doctors willing to steal it. Fuck em, they aint doing nothing with it anyway. get as many details as we can about what they use to heal rats and steal it and actually apply it to people that can use it. it really will take an extreme act to show the community how much we want this.

    The status quo is not and will not work....
    at the time the breakthroughs weren't ready for human use. but you gotta love the forum fighting attitude back then unlike the passive group we have today. they attack you for wanting researchers and doctors held accountable, call you negative, tell you to get a life... this is the inward fighting we must get away from. the scientist have what we want. we should focus on getting those treatments from those scientist. maybe we should return to the days of filing laswsuits. unlike yesterday, the treatments are ready for human use now. heck they were ready for human use several years ago.

  10. #30
    if you come up with a therapy that is superior to the geeta shroffs of the world,enlighten them and let them improve the minimally effective therapy they are already using on patients.win win,unless the primary motive is personal prestige of the western researchers.

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