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Thread: Reasons for Hope and Action

  1. #21
    I'm supposed to meet Jeff Foxworthy on the 17 and I planned on
    giving him some info on paralysis, what can be done about it, who
    is doing something about it, and why we desperately need federal
    funding.

  2. #22
    Quote Originally Posted by spidergirl
    I believe that if there are therapies that can really cure us there's no reason why people should kick in period. Makes no sense. It's a billion dollar patent. There's Johnson & Johnson- i know Casey Johnson and she has horrible diabetes. But these kids really don't care. UM- there is the Bill Gates stuff and what about that Virgin guy? We can do a concert maybe a raise money but unless ur Madonna or U2 i don't know a concert that will raise that much money. We can sell 100 trillion ring tones.. ( seems like its making more money in music than anything else now a days ) We need to lobby Congress. We need some players in the white house that can really understand. Will John Kerry potentially run again? If we do all this how quickly can we get therapies? Perhaps maybe it's meant to be for another country to kick our ass in this too show that we are primitive when it comes too medicine and make Bush look like yet another schmuckie. Ideas people ideas. I can't even fathom that there are promising therapies lingering around while we are suffering. Mindboggeling!! Christopher Reeves help us up there!!

    Johnson & Johnson cares. They put their financial support behind this website for a while.

  3. #23
    wouldnt it be something if EVERY single person doing research on this stuff could be on the same page at all times... what about a HUGE network that somehow attracted the attention of every SCI researcher to brainstorm on and share ideas... I mean something completely dedicated to uniting the advocates and researchers for it. and only for that. if they all somehow could interact with eachother and work together............. pool resources...

    on the other note of money.. anyone friends with bill gates?? he tosses millions around like its nothing all the time!! if only one of his relatives would break his or her back! (that is a joke, and a bad one. id never wish this upon any living soul)
    "One good thing about music, when it hits you, you feel no pain ." Bob Marley

  4. #24
    Senior Member spidergirl's Avatar
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    Quote Originally Posted by antiquity
    Johnson & Johnson cares. They put their financial support behind this website for a while.
    Thats sufficient enough than. I know a Rockefeller too- but her brother just died of a heroine overdose and i hear the family empire is dwindeling away.

  5. #25
    Senior Member spidergirl's Avatar
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    Quote Originally Posted by FellinBarcelona
    wouldnt it be something if EVERY single person doing research on this stuff could be on the same page at all times... what about a HUGE network that somehow attracted the attention of every SCI researcher to brainstorm on and share ideas... I mean something completely dedicated to uniting the advocates and researchers for it. and only for that. if they all somehow could interact with eachother and work together............. pool resources...

    on the other note of money.. anyone friends with bill gates?? he tosses millions around like its nothing all the time!! if only one of his relatives would break his or her back! (that is a joke, and a bad one. id never wish this upon any living soul)
    I dont know if you know Josh Basile ( determined2heal) - him and his father are trying to achieve just this. Besides this, i think they believe in technology vs. the science (which they have stated manyx )

  6. #26
    Quote Originally Posted by spidergirl
    There so many out there that don't know we exist.
    There are so many people that have no clue what goes on when dealing with spinal cord injury, spidergirl. It annoys me to no end. I think that many generous philanthropists would support a cure for paralysis if they understood what struggles SCIers face on a daily basis. Cheryl, I think it's cool that you're networking to help fight for our cause.

    Daniel

  7. #27
    Senior Member spidergirl's Avatar
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    Dr. Young,

    Would you be so kind as too answer my questions i have asked in this thread?

  8. #28
    What's so terrible about being in a chair? I get free parking at the airport ! And the Chicks..they DIG guys in chairs. I get pat on the head ALL the time.

    Who needs a cure when I have ducolax ? It's quickie time

  9. #29
    Quote Originally Posted by spidergirl
    Dr. Young i know that in a previous post and i cant find it for the life of me you mentioned that proof of efficacy will be shown in humans for chronics in 3 years. Does this mean if we can afford it we can travel overseas for treatments that are shown to be promising? I know the whole US thing and the dark cloud we have over our community but u say the cure will not come before industry kicks in. Is this a cure for the average bear with SCI in the US that u speak of? Like for the hospital to apply the therapy?
    spidergirl,

    Yes, with now close to 25,000 posts, it is hard even for me to find what I have written in the past, so let me re-iterate. I will try to focus on chronic spinal cord injury because I know that this is what you are interested in.

    First generation therapies. Several therapies will show some benefit in some people with chronic spinal cord injury, although these therapies are still in phase 1 or 2 trials and therefore not generally accepted For example, Hongyun Huang and three other Chinese groups have now reported significant improvements in sensation and modest improvements in motor function after fetal olfactory ensheathing glial transplants into people with chronic spinal cord injury. Likewise, there have been reports of improvements in people after fetal Schwann cell transplants, adult Schwann cell transplants, and others. The problem with all these trials so far is that they have not been done rigorously and with controls. Also, the improvements have been relatively modest, especially in the motor recovery. Thus, these first generation therapies have not been adopted by doctors or approved by the regulatory agencies. I believe that Fampridine does help improve function in some people with chronic spinal cord injury but it has been very difficult to prove this in the clinical trials carried out by Acorda Therapeutics. However, we may have had a significant breakthrough with the FDA because they have allowed the first "responder" analysis of treatments of spinal cord injury. Several promising therapies have been carried out in subacute spinal cord injury patients: activated macrophages (Proneuron), oscillating electrical fields (Purdue), bone marrow stem cells plus growth factor (Inchon, Korea), and others. Many of these were phase 1 studies and have not yet been verified on larger scale phase 2 or phase 3 trials. Several promising growth inhibitor blocking therapies are now in phase 1 trial, including Cethrin, anti-nogo antibodies. I hope that chondroitinase and nogo receptor blockers will also go into clinical trials soon.

    Second generation therapies. By second generation, I mean improved versions of first generation therapies that restore more function to more people. Several centers are beginning to work on versions of these.

    Third generation therapies. I am thinking mostly of combination therapies in chronic spinal cord injury. Many animal studies have suggested that combination therapies that use cell transplants to bridge the injury site, growth factors that stimulate growth of axons, and growth inhibitor blockers. At the ChinaSCINet, we are working to prepare for the first combination study of a cell transplant and lithium, an agent known to stimulate growth factors. When growth inhibitor blockers become available, we will incorporate them into the combination therapies.

    Progress has been slow because of the lack of government help in funding the clinical trials and the reluctance of many companies to invest in chronic spinal cord injury trials because they regard the field as being a "small market". In reality, the spinal cord injury market is not so small and Wall Street did not think that Fampridine has such a small market in multiple sclerosis when investors drove the stock of Acorda from US$2.20 to now US$14.90 in one week after the announcement of one successful phase 3 clinical trial in multiple sclerosis (MS). Yes, it is a trial of the drug in MS and the number of people with MS is about 390,000. There are some people who have argued that there are over 500,000 people in the United States and over 3 million worldwide with some form of chronic spinal cord injury, whether from ischemia, trauma, cancer, and infectious diseases. The first major success in the field should turn this around, in my opinion.

    I am hopeful that ChinaSCINet will identify therapies that restore function in chronic spinal cord injury. That is why I am spending so much time and effort here in China right now. But, at the same time, I am not giving up on the United States. Clinical trials in the United States are essential. This is because most American doctors don't trust or pay much attention to overseas clinical trials. The delay in transferring information and credibility of overseas clinical trials will slow down U.S. doctor adoption of new treatments and regulatory approval of the treatments. While I believe and hope that ChinaSCINet will help drive clinical trial activities worldwide, people should start thinking about the broader picture. In my opinion, going overseas is not the answer for spinal cord injury treatments in the United States. While individuals may benefit from going overseas, the vast majority of people with spinal cord injury in the United States will not be helped. We need to think bigger and more strategically.


    Wise.

  10. #30
    Senior Member spidergirl's Avatar
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    Quote Originally Posted by Wise Young
    spidergirl,

    Yes, with now close to 25,000 posts, it is hard even for me to find what I have written in the past, so let me re-iterate. I will try to focus on chronic spinal cord injury because I know that this is what you are interested in.

    First generation therapies. Several therapies will show some benefit in some people with chronic spinal cord injury, although these therapies are still in phase 1 or 2 trials and therefore not generally accepted For example, Hongyun Huang and three other Chinese groups have now reported significant improvements in sensation and modest improvements in motor function after fetal olfactory ensheathing glial transplants into people with chronic spinal cord injury. Likewise, there have been reports of improvements in people after fetal Schwann cell transplants, adult Schwann cell transplants, and others. The problem with all these trials so far is that they have not been done rigorously and with controls. Also, the improvements have been relatively modest, especially in the motor recovery. Thus, these first generation therapies have not been adopted by doctors or approved by the regulatory agencies. I believe that Fampridine does help improve function in some people with chronic spinal cord injury but it has been very difficult to prove this in the clinical trials carried out by Acorda Therapeutics. However, we may have had a significant breakthrough with the FDA because they have allowed the first "responder" analysis of treatments of spinal cord injury. Several promising therapies have been carried out in subacute spinal cord injury patients: activated macrophages (Proneuron), oscillating electrical fields (Purdue), bone marrow stem cells plus growth factor (Inchon, Korea), and others. Many of these were phase 1 studies and have not yet been verified on larger scale phase 2 or phase 3 trials. Several promising growth inhibitor blocking therapies are now in phase 1 trial, including Cethrin, anti-nogo antibodies. I hope that chondroitinase and nogo receptor blockers will also go into clinical trials soon.

    Second generation therapies. By second generation, I mean improved versions of first generation therapies that restore more function to more people. Several centers are beginning to work on versions of these.

    Third generation therapies. I am thinking mostly of combination therapies in chronic spinal cord injury. Many animal studies have suggested that combination therapies that use cell transplants to bridge the injury site, growth factors that stimulate growth of axons, and growth inhibitor blockers. At the ChinaSCINet, we are working to prepare for the first combination study of a cell transplant and lithium, an agent known to stimulate growth factors. When growth inhibitor blockers become available, we will incorporate them into the combination therapies.

    Progress has been slow because of the lack of government help in funding the clinical trials and the reluctance of many companies to invest in chronic spinal cord injury trials because they regard the field as being a "small market". In reality, the spinal cord injury market is not so small and Wall Street did not think that Fampridine has such a small market in multiple sclerosis when investors drove the stock of Acorda from US$2.20 to now US$14.90 in one week after the announcement of one successful phase 3 clinical trial in multiple sclerosis (MS). Yes, it is a trial of the drug in MS and the number of people with MS is about 390,000. There are some people who have argued that there are over 500,000 people in the United States and over 3 million worldwide with some form of chronic spinal cord injury, whether from ischemia, trauma, cancer, and infectious diseases. The first major success in the field should turn this around, in my opinion.

    I am hopeful that ChinaSCINet will identify therapies that restore function in chronic spinal cord injury. That is why I am spending so much time and effort here in China right now. But, at the same time, I am not giving up on the United States. Clinical trials in the United States are essential. This is because most American doctors don't trust or pay much attention to overseas clinical trials. The delay in transferring information and credibility of overseas clinical trials will slow down U.S. doctor adoption of new treatments and regulatory approval of the treatments. While I believe and hope that ChinaSCINet will help drive clinical trial activities worldwide, people should start thinking about the broader picture. In my opinion, going overseas is not the answer for spinal cord injury treatments in the United States. While individuals may benefit from going overseas, the vast majority of people with spinal cord injury in the United States will not be helped. We need to think bigger and more strategically.


    Wise.
    OK have i told you lately????

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