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Thread: Kate's Working 2 Walk 2014 Seattle Blog is now LIVE!

  1. #11
    Thanks Kate. I followed your blog these past few days and came away encouraged and angry. Encouraged because it seems like many scientists are so close to finding treatments that will both restore function and improve quality of life. Angry because the $$ and advocacy for $$ is still lacking. That said, congrats to you and the W2W folks... again this was top notch information transmitted from researchers to the public.

  2. #12
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by GRAMMY View Post
    I moderated the silver breakout. He was still talking data and strategies with everyone long after the evening reception had started. Much to talk about, but too much to report via my tablet. You'll be surprised.
    I'm all ears and I hope so! It's just frustrating working on rats, then cats ya know? Long way away from humans. I didn't see him mention respiratory therapies? I worry that we're going to start losing people if that isn't corrected soon. I remember the media commenting that 9yrs was the lifespan for a vent dependent quad and that's how long Reeve lasted. We have many exceptions to the rule around here .. but still.

    It feels odd to have Silver as the rockstar last year and now Edgerton has taken that spot for me .. to be recruiting for second human trials already is huge. Just hope they don't eff it up by, "We must fine tune." For every year taken to fine tune, I wonder how many paralyzed people die. And yes, I worry that I'll be one of them.

    I take it back - I just read the breakout session with Edgerton. I understand wanting to make money from this .. I understand having to fine tune. I do - I get it - I just hate that it's costing patient health and time and suffering. Wish there was a bone to throw some of us NOW. Five years - I almost laughed out loud.
    Last edited by lynnifer; 10-19-2014 at 06:07 AM.
    Make America Sane Again. lol

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

  3. #13
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by ECUrach85 View Post
    Ive got a handy dandy mom to push me around and talk behind my back. ��
    AND I met a doctor who does tendon and nerve transfers in the arm/hand. She was a huge help !

    That's excellent news ... and I'm glad you got some answers and hope it helps!!! Definitely worth the trip for you then.
    Make America Sane Again. lol

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

  4. #14
    Quote Originally Posted by lynnifer View Post
    I'm all ears and I hope so! It's just frustrating working on rats, then cats ya know? Long way away from humans. I didn't see him mention respiratory therapies? I worry that we're going to start losing people if that isn't corrected soon. I remember the media commenting that 9yrs was the lifespan for a vent dependent quad and that's how long Reeve lasted. We have many exceptions to the rule around here .. but still.

    It feels odd to have Silver as the rockstar last year and now Edgerton has taken that spot for me .. to be recruiting for second human trials already is huge. Just hope they don't eff it up by, "We must fine tune." For every year taken to fine tune, I wonder how many paralyzed people die. And yes, I worry that I'll be one of them.

    I take it back - I just read the breakout session with Edgerton. I understand wanting to make money from this .. I understand having to fine tune. I do - I get it - I just hate that it's costing patient health and time and suffering. Wish there was a bone to throw some of us NOW. Five years - I almost laughed out loud.
    I hear yeah... Overall how did you guys think the symposium went? Are we moving towards future treatments? With Substantial recovery?

  5. #15
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    May be we will be moving James but will take again and again many years it looks. So bad

  6. #16
    From Kate's blog:

    "Geoff Kent

    Mr. SCI Sucks is presenting funding ($52,680.00) to Brian Kwon. Geoff raises money through the Chicago Marathon (where he rolls the 26.2). That money will be matched, so it’s a big deal.
    Geoff: I think the reason this research — whoa, the human pathophysiology of spinal cord injury. What does that mean? It means we don’t really understand what we’re talking about. Our injury models need work, to put it mildly. Let’s figure out the problem we’re trying to solve.
    For all of you out there, use the u2fp science advisory board to help you figure out how to spend money."

    If I get it right this donation will support the biomarkers research, which I believe is relevant just for acute SCI.

    Am I missing something?

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

  7. #17
    Senior Member khmorgan's Avatar
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    Quote Originally Posted by paolocipolla View Post
    From Kate's blog:

    "Geoff Kent

    Mr. SCI Sucks is presenting funding ($52,680.00) to Brian Kwon. Geoff raises money through the Chicago Marathon (where he rolls the 26.2). That money will be matched, so it?s a big deal.
    Geoff: I think the reason this research ? whoa, the human pathophysiology of spinal cord injury. What does that mean? It means we don?t really understand what we?re talking about. Our injury models need work, to put it mildly. Let?s figure out the problem we?re trying to solve.
    For all of you out there, use the u2fp science advisory board to help you figure out how to spend money."

    If I get it right this donation will support the biomarkers research, which I believe is relevant just for acute SCI.

    Am I missing something?

    Paolo
    Paolo, would you say MRIs are only useful to acute SCIs, i.e. assessing the extent of injury?

    I think we have seen SCI researchers using MRIs to examine chronic cords to detect growth or non-growth of axons far after the SCI becomes chronic. I would expect biomarkers would be used similarly. That is, they would immediately useful to determine the severity of an acute SCI, but I don't see why they would not be even more useful providing a quantitative measure of the effectiveness of a new SCI treatment -- if and when they are available.

  8. #18
    Quote Originally Posted by khmorgan View Post
    Paolo, would you say MRIs are only useful to acute SCIs, i.e. assessing the extent of injury?

    I think we have seen SCI researchers using MRIs to examine chronic cords to detect growth or non-growth of axons far after the SCI becomes chronic. I would expect biomarkers would be used similarly. That is, they would immediately useful to determine the severity of an acute SCI, but I don't see why they would not be even more useful providing a quantitative measure of the effectiveness of a new SCI treatment -- if and when they are available.
    I am rather familiar with Brian Kwon biomarkers studies, thay are just for acute SCI unless he presented something new, but I don't think so.

    Did you read any paper or attended presentations from Brian Kwon about biomarkers?

    Chronic SCI would have been mentioned if this study was rilevant also for chronics I guess

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

  9. #19
    Moderator kate's Avatar
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    Well . . . here's my takeaway.

    First, I share the sense of bait and switch. I own that I've been (believe me, not on purpose) part of how that gets done. On this year's blog I included the links to everything I've reported from 2007 on. Seven years and counting. Some of it makes me cringe.

    As my understanding of what we're up against has grown, so have the possible approaches. At first it was just good to know that ANYBODY was doing ANYTHING that held promise. Hans Keirstead, Stephen Davies, Os Steward, Mark Tuszynski, Wise, on and on . . . I've been trying to just keep showing up and reporting back on what they're saying. Paolo would say, I think, that we as a community are nowhere near harsh enough -- that we don't ask the tough questions.

    The whole thing with the new book kind of came from that sort of place. The new book is me trying to say, "People, we don't really understand this landscape well enough to even know what to demand. We're vulnerable to getting snowed -- specifically I have been vulnerable to getting snowed -- and I am DEAD FREAKING SICK OF IT." That is the problem I'm trying to solve.

    You can't ask tough questions if you don't have basic grasp, okay? At least, I can't. I think we need to understand a lot more about the way money gets passed out. And about why things take so damn long. And about what motivates your average post-doc in your average sci research center. And about what we are therefore able to do to push things forward. There are pressure points, I think, and if we can hit them all hard we have a shot.

    On the science, I would say this:

    Regeneration (meaning figuring out how to get axons to grow and form the proper connections) is a bloody tough puzzle. it's the end game, and it's still far off. I believe that they'll get there eventually but it won't be soon. Regeneration is "the cure."

    In the meantime, we have SO MUCH reason to support this new stuff from the Harkema lab. I met with Rob Summers because he lives a couple of hours from me and because he was the brave guy who said, "Go ahead. Please. Stick that thing into my back and let's see what happens." If someone had told me a year ago that we were going to hear about a therapy that was in the Model T phase that had helped four out of four chronic guys recover at least some stuff, I'd have said, "Right." And rolled my eyes.

    But that's what happened, and they're still guessing about why. I am DYING to see data from 36 more people. I am NOT expecting a miracle, right? I AM expecting that the scientists who are running this will themselves be surprised by how it unfolds. But we won't know unless they do it. The Big Idea really is a big idea. It's a private foundation that has been in this world for a long time getting behind scientists who are saying that they are prepared to throw down on behalf of people with chronic spinal cord injuries.

    Not to pick on Paolo, but he does seem to be playing the Cassandra role here -- calling out this research as anecdotal. In a way, he's right. It's only these four guys. We haven't seen hard data on their before/after pain, bladder, bowel, sexual function, etc. To which I would say, geez, that's because nobody thought to measure in the rigorous scientific method way because nobody dreamed that the epistim thing would do what it has done.

    Hence, the need for 36 more.

    Being perfectly honest, I want to see something happen while the sci person I care most about can still benefit. He turned 59 a month ago. I think the odds are in his favor.

  10. #20
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    Kate when this trial starts with 36 patients and within how much time we can know results?

    Is it possible that epidural therapy van be performed in other countries or clinics soon as few countries trying stem cells already?

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