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Thread: Why Don't We Have a Cure for Spinal Cord Injury? 2016

  1. #21
    Paolo,

    This ChinaSCINet Phase II Safety Study turned chronic completes into incompletes. These subjects were injured from 2-17 years. Fifteen out of twenty minimally regained the ability to step for hours with upper body supported walkers, some progressed further. Over half regained bowel and bladder function.

    Did you not look at the SCIM Scores?

    Do you expect researchers to deliver a cure with nothing in between?

    This trial changed lives.

    You keep stating it shouldn't go forward, why?

  2. #22
    I agree with Jim. Maybe not as far as assigning blame, but to say cure is up to us. Funny thing to say that the goal of this medical miracle, cure, is up to us, but I seriously believe that it is.
    It's not something that can be done easily, not because of the effort it takes, but finding out what to agitate for. While
    Jim raises as good point about lobbying I think we have to do more thinking on what we lobby for.
    I was actually having this conversation with a comrade in cure yesterday. A very experienced person he stated that first he thought it was the money, so he got the money. Then he thought it was the relationships (which thr money can build) so he went after that. In the end I think we both concluded that the system itself is not set up for cure and finding who to reset that system is fundamental.
    I don't know the exact answer but I hope to explore this in further blogs on www.stemcellsandatombombs.blogspot.jp.
    Like I said, I don't know all the answers, but I think I know some. One is rewarding the scientists who produce so they are not forced into having to waste money having to raise funds or got to a tech company. The researchers I have spoken to would prefer to be left alone to research and not have to chase the money train. There is some thinking on this point already if you search "prizes not patents". Secondly, I believe that the way money is doled out by the NIH and other bodies needs to be more results oriented. In fact, they could divide the money between basic science and other projects which could be results oriented (e.g. pre clinical and clinical work).
    The one point I would believe in firmly is that if the way the system itself is organised is the main problem, then only government (and thus the necessity to lobby) can resolve the problem.
    I found some interesting articles in the Lancet the other day that you should have a look at which talks about some of the failures in research.
    http://www.thelancet.com/series/research

    https://www.google.co.jp/amp/s/amp.f...7-2359a58ac7a5

    Quote Originally Posted by Jim View Post
    The SCI Community has no one to blame but ourselves. We have not organized and demanded a cure. When is the last time we lobbied our representatives for increased funding? Researches are working their asses off while we as a collective do nothing.

  3. #23
    Senior Member lurch's Avatar
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    Going forward what could a possible path to a cure look like that bypasses these hurdles? Dr Silver seems to pretty much have chronic SCI cracked from what I can gather. What barriers is hit going to hit? His peptide treatment seems quite innocuous to me when there are athletes banging peptides all over the place.
    What would a Musk like intervention look like?

  4. #24
    Senior Member lynnifer's Avatar
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    Cells. Silver’s work still has a long way to go. I believe in it, but in for the long game there. What he’s achieved has been amazing.

    Back what though? No one has a viable treatment or cure, yet.
    Last edited by lynnifer; 11-02-2017 at 07:20 AM.
    Make America Sane Again. lol

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  5. #25
    Quote Originally Posted by Jim View Post
    Paolo,

    This ChinaSCINet Phase II Safety Study turned chronic completes into incompletes. These subjects were injured from 2-17 years. Fifteen out of twenty minimally regained the ability to step for hours with upper body supported walkers, some progressed further. Over half regained bowel and bladder function.

    Did you not look at the SCIM Scores?

    Do you expect researchers to deliver a cure with nothing in between?

    This trial changed lives.

    You keep stating it shouldn't go forward, why?
    Jim, do you plan on participating in the US trial since you're so bullish about it? When do we get to see you stepping for hours in a walker?

  6. #26
    Quote Originally Posted by StemCells&AtomBombs View Post
    ...Like I said, I don't know all the answers, but I think I know some. One is rewarding the scientists who produce so they are not forced into having to waste money having to raise funds or got to a tech company. The researchers I have spoken to would prefer to be left alone to research and not have to chase the money train...
    SC&AB, I'm curious as to what you mean by "rewarding scientists who produce". Do you mean produce results of functional return in studies? Or something else? I'm just asking for clarification.

  7. #27
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    Quote Originally Posted by lynnifer View Post
    I've heard this before and call BS. Remember the old stem cell Bush era thing and we all paid to send test tubes to Washington? Nothing ... the demonstrations in DC ... nothing.

    It needs to happen to another Chris Reeve, as sorry as I am to say that.

    Hmmm... Tom Hanks would be an ideal candidate...
    T3-T7 complete since Sept 2015

  8. #28

    Mark Zuckerberg

    Quote Originally Posted by Mize View Post
    Hmmm... Tom Hanks would be an ideal candidate...
    No not Tom Hanks. If Mark Zuckerberg sustained a spinal cord injury at C1-C2 I bet research and funding would happen.

    I haven't made my full comment on this topic but this was part of it.

    Ti
    "We must overcome difficulties rather than being overcome by difficulties."

  9. #29
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    Much better idea t4m. Maybe Zuckerberg and Musk in a Hyperloop demo?

    (FYI, I really don't wish SCI on anyone and this thread tangent is merely in jest)
    T3-T7 complete since Sept 2015

  10. #30
    One idea is "prizes not patents". It's quite an interesting idea (I think it was once introduced in thr American senate by Sanders before he became Bernie.
    I've done quite a bit of reading about it.
    Google "prizes not patents" and you'll see a lot about it, even from noble winning economists like Joseph Stiglitz.
    In this case, I don't mean the prize contests that we see around, but funded by the state. The theory is that it would also save the state money as the patent would be in the public domain. This also builds research as anyone could then use the non-patented research for free.
    Quote Originally Posted by tomsonite View Post
    SC&AB, I'm curious as to what you mean by "rewarding scientists who produce". Do you mean produce results of functional return in studies? Or something else? I'm just asking for clarification.

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