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Thread: Cheer me up

  1. #11
    Senior Member lynnifer's Avatar
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    Enzymes. Peptides. No clinical trials in humans yet and far off still. No faults here - I think the work he does is fantastic - it's just a long ways off in my opinion.

    Takes 15+yrs for an oral med to make it to market (at least it did more than 25yrs ago when I took pharmacy tech in college - dropped out to work, lol). That's if everything goes smoothly, which it never does.

    What was your impression?
    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

  2. #12
    I learned 10-12 years is average in a healthcare economics class. 70 something percent never make it past phase 2. FDA errors on the side of disapproval for legality issues.

    Also Wouldn’t be surprised if a new treatment like silvers or renetx had decent improvement in early stages that it would be fast tracked.

  3. #13
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    Injured in 1982...cure has always been framed in 5 year increments. Yada Yada Yada! Do the math cure not anywhere close in 2018!

    That said, your mantra should be hope for the best, be prepared for the worst and get on with living with your current reality the very best you can. Best guess you will probably die with the current level of injury you have now.

    Sorry to be the bearer of that message, but until someone comes up with a miraculous break through that is some how a grand slam, approved by the FDA, paid for by Medicare or other insurance, (how long do those approvals take..years) none of us will stand up out of our wheelchairs and suddenly be just normal again. After a spinal cord injury, degeneration is so quick, pain response so undefined, you have to ask yourself, if I could turn it all back on would I be in such horrendous pain that the pain I experienced while paralyzed seemed like nothing.

    Sorry newbies, I just don't see cure happening for anyone already afflicted with spinal cord injury. I think the best hope is that some one will come up with a treatment to apply to someone with a newly acquired spinal cord injury in that golden hour. For now that is the best hope. For the rest of us...who knows...just don't set your hopes on some immediate, stand up, and go on with the life you once knew cure.

  4. #14
    If these results are repeated this year in our clinical trial networks in the US, India, and Taiwan, there will be much to be excited about.

    gjnl, much of what you said is opposte of our experience in this trial. There was no diffence seen in recovery of those injured from 2 to 17 years. Length of time injured did not effect recovery of bowl, bladder, and walking. If the results are repeated in our upcoming 2b trials, it will quickly go to phase 3, and then be approved and covered by insurance. In the meantime, it will be available under expanded compassionate use.

    There are other promising trials, and many, many dedicated researchers pursuing promising avenues of research. We have solid advocacy groups like Unite 2 Fight Paralysis, that educate, bring more advocates on board, and support research and clinical trials.

    The slow pace is extremey frustrating, but we are getting there.
    Last edited by Jim; 02-19-2018 at 01:21 PM.

  5. #15
    Quote Originally Posted by gjnl View Post
    Injured in 1982...cure has always been framed in 5 year increments. Yada Yada Yada! Do the math cure not anywhere close in 2018!

    ...just don't set your hopes on some immediate, stand up, and go on with the life you once knew cure.
    EXACTLY... 5 years haha... They gave me the same timeline when I got hurt in 09.
    Invivo or some company made a video on YouTube of crippled monkies walking after some transplant and that got me excited - date on video Jun. 27, 2013
    http://video.foxnews.com/v/251394824...#sp=show-clips
    but.......

    This is not happening in our lifetime big Pharma will not let it
    Last edited by Mac85; 02-19-2018 at 01:31 PM. Reason: add link
    C5/C6 Complete since 08/22/09

  6. #16
    Senior Member lurch's Avatar
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    Quote Originally Posted by Mac85 View Post
    EXACTLY... 5 years haha... They gave me the same timeline when I got hurt in 09.
    Invivo or some company made a video on YouTube of crippled monkies walking after some transplant and that got me excited - date on video Jun. 27, 2013
    http://video.foxnews.com/v/251394824...#sp=show-clips
    but.......

    This is not happening in our lifetime big Pharma will not let it
    This is a genuine question. Do you think that Pharma is genuinely against us. They get more profits from us being in chairs etc etc.

  7. #17
    Quote Originally Posted by lurch View Post
    This is a genuine question. Do you think that Pharma is genuinely against us. They get more profits from us being in chairs etc etc.
    There is no conspiracy, they are not against us. But their incentive and motivation is not the same as ours

  8. #18
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    Quest for a SCI Cure: 2018 Research to Watch
    https://spinalpedia.com/blog/2018/02...jury-research/

  9. #19
    Senior Member lurch's Avatar
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    thanks for the responses everyone

  10. #20
    Quote Originally Posted by lurch View Post
    thanks for the responses everyone
    Endparalysis.org different treatment updates

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