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Thread: ChinaSCINet Update

  1. #2861
    Quote Originally Posted by Moe View Post
    That publication is from July 2016, not July 2019.
    So did you see the videos from 2016?

  2. #2862
    Senior Member Moe's Avatar
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    Quote Originally Posted by spayne View Post
    So did you see the videos from 2016?
    I wasn't there in 2016.
    "Talk without the support of action means nothing..."
    ― DaShanne Stokes

    ***Unite(D) to Fight Paralyses***

  3. #2863

    Has anyone here on this site seen the videos?

    http://www.newmobility.com/2016/07/china-trials/

    Go to the end of the page and watch Dr. Wise Young. The first 1 minute 15 he talks about the videos.

    At 21m30s - 22m and 31m 53s he talks about the videos.

    If you have seen the videos can you please describe how fast the people walk and their walking quality.

  4. #2864
    This thread makes me very sad. I joined this group years ago when my oldest was in high school and with friends when one of them dove into the shallow end of a pool, crushing C5 and paralyzed. It's been almost 15 years.... his friends life has been very, very difficult. I had faith that clinical trails would restore some function for him and others. I sent some $$ to many of these trials including SCI China. Fifteen yeas and nothing to speak of. The paralyzed are still paralyzed. Clinical trials are not happening in the US with the exception of the exoskeleton suits which bring back some mobility for those in the trials.

  5. #2865
    Wise's trial in the US is in the pipeline and there is a clinical trial for chronic cervical injuries currently recruiting in the US, go to ReNetX.com. Everyone shares your frustration and I'll say thank you for caring! Turn sadness into pushiness, nudge your senators and congressmen, they need to hear your voice and allocate more $$ to support. Scientists are working hard, more and more translational studies are planned. U2FP has some good podcasts that are inspiring, have a listen. It's pretty cool knowing someone touched by SCI as an acquaintance still cares, thank you.

  6. #2866
    Quote Originally Posted by spayne View Post
    http://www.newmobility.com/2016/07/china-trials/

    Go to the end of the page and watch Dr. Wise Young. The first 1 minute 15 he talks about the videos.

    At 21m30s - 22m and 31m 53s he talks about the videos.

    If you have seen the videos can you please describe how fast the people walk and their walking quality.
    I have seen the videos, the way they drag their body around has nothing to do with walking.

    As far as I know UCB cells don't fix SCI, not even a rat SCI, both acute and chronic SCI.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  7. #2867
    Quote Originally Posted by beachlover View Post
    This thread makes me very sad. I joined this group years ago when my oldest was in high school and with friends when one of them dove into the shallow end of a pool, crushing C5 and paralyzed. It's been almost 15 years.... his friends life has been very, very difficult. I had faith that clinical trails would restore some function for him and others. I sent some $$ to many of these trials including SCI China. Fifteen yeas and nothing to speak of. The paralyzed are still paralyzed. Clinical trials are not happening in the US with the exception of the exoskeleton suits which bring back some mobility for those in the trials.
    You are not alone.

    Problem is that trials do not make a cure happen.

    How can doing a clinical trial with a therapy that did not even cure a rat result in curing a person with SCI?

    Let's just look at all clinical trials that have been done so far. They all failed. Why? Because they all were based on very weak preclinical data.

    In my opinion we should at least really turn non walking rats with chronic SCI into walking rats. Then test the therapy on people.

    Paolo
    Last edited by paolocipolla; 01-19-2020 at 09:09 PM.
    In God we trust; all others bring data. - Edwards Deming

  8. #2868

    Tell your friend to hang in there

    Quote Originally Posted by beachlover View Post
    This thread makes me very sad. I joined this group years ago when my oldest was in high school and with friends when one of them dove into the shallow end of a pool, crushing C5 and paralyzed. It's been almost 15 years.... his friends life has been very, very difficult. I had faith that clinical trails would restore some function for him and others. I sent some $$ to many of these trials including SCI China. Fifteen yeas and nothing to speak of. The paralyzed are still paralyzed. Clinical trials are not happening in the US with the exception of the exoskeleton suits which bring back some mobility for those in the trials.
    I hit the ground headfirst off a mountain bike 28 years 7 months ago and am C4/5 and now 65 years old but have not given up hope. It is hard life but I DECIDED to have a great life and I have.

  9. #2869
    Senior Member Moe's Avatar
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    Someone's seems unaware that there's a phase IIb human trial coming soon.. why suggest to go back to rats again if human UCB trials has already shown improvements?
    "Talk without the support of action means nothing..."
    ― DaShanne Stokes

    ***Unite(D) to Fight Paralyses***

  10. #2870
    Quote Originally Posted by beachlover View Post
    This thread makes me very sad. I joined this group years ago when my oldest was in high school and with friends when one of them dove into the shallow end of a pool, crushing C5 and paralyzed. It's been almost 15 years.... his friends life has been very, very difficult. I had faith that clinical trails would restore some function for him and others. I sent some $$ to many of these trials including SCI China. Fifteen yeas and nothing to speak of. The paralyzed are still paralyzed. Clinical trials are not happening in the US with the exception of the exoskeleton suits which bring back some mobility for those in the trials.
    beachlover, there's actually a great deal to speak of regarding ChinaSCINet and SCINetUSA. Attached is the published paper from the ChinaSCINet Phase II Trial. On page 1931 there is a graph that shows the improvements the subjects made. These patients were complete (AIS A), several converted to ASIA B or C.

    The SCIM (Spinal Cord Independence Measure) Scores tell the story. 19 out of 20 had substantial increases in this score. This meant they went from being dependent on a caregiver to do most things, to becoming independent. This includes the return of walking, bowel, and bladder function.

    This trial is about to be repaeted (with changes) in the US. https://clinicaltrials.gov/ct2/show/NCT03979742
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