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Thread: unite2fight paralysis 2017 2017 WORKING 2 WALK SYMPOSIUM

  1. #21
    I received an email that it's a go, no issues. Also-

    After several conversations among U2FP's leadership about the effects of Hurricane Irma and the recognition that many folks are still recovering, we have decided to permanently extend the Early Bird rates (a 30% discount) through the remainder of the online registration period (ends October 9th). We understand that many of our attendees from Florida and the region have enough to contend with, and want to make it as easy as possible to attend the symposium. Register Now!

  2. #22
    Senior Member lunasicc42's Avatar
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    this years w2w better be damn explosive with clinical news cuz allah damn well knows that we are starving for news around here
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


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  3. #23
    Senior Member lynnifer's Avatar
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    LOL luna ... but I get it. What I'm wondering is why Edgerton's stuff isn't prevalent now? It's already safe ... we've known about it for a few years now ... what's the hold-up?

    Still excited to see what Silver has to report on.

    Miami Project ... going to get booed unless they have their stupid Schwann cells figured out and are close to announcing something big. 33yrs they've been at it.
    Make America Sane Again. lol

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

  4. #24
    Quote Originally Posted by lynnifer View Post
    LOL luna ... but I get it. What I'm wondering is why Edgerton's stuff isn't prevalent now? It's already safe ... we've known about it for a few years now ... what's the hold-up?

    Still excited to see what Silver has to report on.

    Miami Project ... going to get booed unless they have their stupid Schwann cells figured out and are close to announcing something big. 33yrs they've been at it.
    Funny I actually just emailed them and asked them where it was with the chronic trial. Just read an article saying $450 million raised and an upcoming 32nd Sports Gala...as we all know ZERO chronic trials. This is phase 1 they started recruiting for a couple of years ago. Even if they ever get going it's years till they get thru the FDA process. At least that's 10 more sports legend galas they can have!!!!

  5. #25
    Yes, implant had someone stand up in 2009 and was existing tech from the 1980s. It's almost the end of 2017 and still can't get to help people. Has the backing of CDRF but you look at the big idea and they appear to only raise 60% of what's needed. Their mission statement is to curing SCI by funding innovative research and improving the Q of L for people with paralysis etc.

    saw an interview with his son calling the epidural not a cure but the biggest breakthrough yet. How have you been not able to raise $ for this? You have been at it for over 2 years. Shouldn't you already have some $ earmarked for this stuff?

    I rattled off a nice email with some questions to them to help me understand why this is so hard and slow for them? I have a LMN injury so don't even qualify but have friends that would benefit greatly from things such as improvement of or return of body temp control but they can't get it. Very hard to understand.


  6. #26
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by Lyerly View Post
    Funny I actually just emailed them and asked them where it was with the chronic trial. Just read an article saying $450 million raised and an upcoming 32nd Sports Gala...as we all know ZERO chronic trials. This is phase 1 they started recruiting for a couple of years ago. Even if they ever get going it's years till they get thru the FDA process. At least that's 10 more sports legend galas they can have!!!!
    The miami project does indeed have their trial with schwann cells ongoing with some pretty lax inclusion/exclusion criteria for chronic injuries, phase one was completed and published a little while ago and it's taking them seemingly forever to start the next phase... It's not like the miami project is hard-up for funds or resources so I can't understand why they aren't moving at a little brisker pace but hey; I am indeed on the outside looking in.
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
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  7. #27
    The only thing I could find was an article about them completing phase 1 for acute

    https://m.medicalxpress.com/news/201...-clinical.html

  8. #28
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by Lyerly View Post
    The only thing I could find was an article about them completing phase 1 for acute

    https://m.medicalxpress.com/news/201...-clinical.html
    sorry, I am confused... I think the phase one study on chronics by the miami project is completed but not yet published or something.... Aaaargh I am so confused now. I swore it was published
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

  9. #29
    Senior Member lunasicc42's Avatar
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    my mistake... According to this: https://clinicaltrials.gov/ct2/show/...draw=3&rank=22 the trial ends in January 2018
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

  10. #30
    Quote Originally Posted by lunasicc42 View Post
    my mistake... According to this: https://clinicaltrials.gov/ct2/show/...draw=3&rank=22 the trial ends in January 2018
    They had me come down to Miami to be evaluated for the trial over 2 years ago. The MRI showed that my injury site was too large.

    This was annoying Bc there wasn't any restriction like that for the acute, why for the chronic? Only would impact he amount of cells injected.


    About a year after I went I emailed with them and they admitted they were having a problem finding people that fit the requirements. Especially since a lot of T injuries are trauma accident such as car wrecks, so the injury sites were often too big. So my thought was ok, get with FDA and change it.


    Again, this is for a PHASE I safety trial. Can't even get that up and going, at least that's how it appears. This pace is decades. At least they have a nice building in Miami and I saw some nice looking women on my trip.

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