Page 3 of 4 FirstFirst 1234 LastLast
Results 21 to 30 of 37

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

  1. #21
    Quote Originally Posted by kate View Post
    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.
    Very well said Kate!

  2. #22
    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
    Grammy,

    Can you clear this?

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

  3. #23
    Quote Originally Posted by kate View Post
    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.
    .....
    It is worse than this, because not even basic questions are asked for ex: Is this research relevant for chronic SCI?

    I think this is a legitimate question that should be asked all the times chronic SCI is not mentioned.

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

  4. #24
    Quote Originally Posted by kate View Post
    Well . . . here's my takeaway.

    ....

    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.
    ...
    That is a very good point and I agree with what you say here. I have just spent the whole afternoon in a lab with principal invetigators, post docs, PHD students..
    There are pivotal points that can be effective especially if you talk about obstacles to clinical trials like costs, number of patients needed, time, how to get the interest of investors, profit potential.. etc..

    The education of cure activists is far from good enough at the moment, so we should seriously determine why after many years of CC & W2W we are still so behind.

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

  5. #25
    Quote Originally Posted by kate View Post
    Well . . . here's my takeaway.
    ...
    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."
    ...
    We agree 100% here.

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

  6. #26
    Quote Originally Posted by kate View Post
    Well . . . here's my takeaway.

    .....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.
    I appreciate you being perfectly honest, it is not common in my experience and makes all you say "reasonable".

    I support The Right to Try" approach in SCI.

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

  7. #27
    Moderator kate's Avatar
    Join Date
    Jan 2002
    Location
    bellevue, wa, usa
    Posts
    10,991
    Let me try. As I understood that talk, Kwon was saying that knowing MORE about the chemistry & physiology of each injury would allow people designing drugs, devices and trials to do their jobs better.

    Faster. With more specificity. If you know what the presence of this molecule instead of that one is likely to mean in terms of a patient's condition, you can screen your study applicants. Some interventions that might have failed but that CAN help certain populations will get approved instead of denied.

    I didn't hear this as being so much about time since injury as being about more clarity with respect to different injuries.

  8. #28
    Quote Originally Posted by kate View Post
    Let me try. As I understood that talk, Kwon was saying that knowing MORE about the chemistry & physiology of each injury would allow people designing drugs, devices and trials to do their jobs better.

    Faster. With more specificity. If you know what the presence of this molecule instead of that one is likely to mean in terms of a patient's condition, you can screen your study applicants. Some interventions that might have failed but that CAN help certain populations will get approved instead of denied.

    I didn't hear this as being so much about time since injury as being about more clarity with respect to different injuries.
    OK, so from the presentation it seems it wasn't clear if and how this line of research might be relevant to chronic SCI and no one asked?

    Bottom line people going home from W2W didn't understand biomarkers are meant just for acute SCI as MRI alone tells relatively little info about the actual condition of the injury in acute SCI.

    Perhaps for the future it would be usefull to provide in advance to people attending an abstract of what speakers will present so once you listen to a presentation you have already an idea of what you are going to hear.
    I always read abstracts of the presentations (when available) before attending a meeting. I think it really helps.

    Paolo
    Last edited by paolocipolla; 10-21-2014 at 07:03 PM.
    In God we trust; all others bring data. - Edwards Deming

  9. #29
    Moderator kate's Avatar
    Join Date
    Jan 2002
    Location
    bellevue, wa, usa
    Posts
    10,991
    I'm sure Chris is reading this, so I'll let her share your thoughts with the board. As you know, I write the blog independently & have no control over anything except that. I don't see the presentations ahead of time (nobody does, as far as I know) but I do read the bios from the materials published at u2fp ahead of the conference & try to have a look at what the person has done & where their focus is. It can be challenging to get their message out faithfully & clearly, to put it mildly.

    I think that anybody who tracks the conference through any method & cares about what happens there should feel free to go to u2fp.org and use the contact button to talk with them directly. They're trying hard to represent you.

  10. #30
    Quote Originally Posted by paolocipolla View Post
    OK, so from the presentation it seems it wasn't clear if and how this line of research might be relevant to chronic SCI and no one asked?

    Bottom line people going home from W2W didn't understand biomarkers are meant just for acute SCI as MRI alone tells relatively little info about the actual condition of the injury in acute SCI.

    Perhaps for the future it would be usefull to provide in advance to people attending an abstract of what speakers will present so once you listen to a presentation you have already an idea of what you are going to hear.
    I alwasy read abstrats of the presentations (when available) before attending a meeting. I think it really helps.

    Paolo
    Brian Kwon was a last minute replacement speaker for another who cancelled. He wasn't even listed on the agenda, that's how last minute he was. He literally hopped a plane from Vancouver, gave a presentation, then went back to Vancouver. He wouldn't have had time to put together an abstract. I like your idea, but in this case it wouldn't have worked.

    I think his line of research is absolutely related to chronic SCI. The mere fact that it is done on acute SCI doesn't mean it only deals with acute SCI alone. All acutes become chronics - you know this Paolo. If we have a better system of determining what a person will eventually end up being (ASIA A, B, or to what degree C or D), or even what "kind" of ASIA A someone is (discomplete, flaccid, spastic, etc), then people will be able to get much more customized treatments early in their SCI as well as down the road when they become chronic. That is one way it relates, indirectly, to chronic SCI.

    You also must keep in mind this research is in its infancy. If we can tell what kind of ASIA A or ASIA B somebody is at the acute stage, it is reasonable we would be able to tell more about their injury at the chronic stage as well. Here are a couple of hypothetical questions; What therapies might a 5 years post-SCI patient best respond to? I'm sure lots of people would like to know what anti-spasticity or UTI medication is best for them to take instead of just doing trial and error. I'm sure patients and researchers would like to know if some people are going to respond to robotic vs. manually assisted treadmill training better. I'm sure doctors and patients would like to know if one of Jerry Silver's cocktails will work better for them than Wise's or Murray Blackmore's regenerative therapies. Or, I'm sure patients would like to know exactly what a potential treatment might give them back, if they can't expect to get everything.

    This line of research is in its infancy. If you think a little bit more about it, you will realize you can't write it off just because Brian Kwon wants to apply it to acute SCI. It seems like a sensible place to start to me.

Similar Threads

  1. Live from Working 2 Walk 2011!
    By kate in forum Cure
    Replies: 139
    Last Post: 09-30-2015, 12:21 PM
  2. Live from Working 2 Walk 2010!
    By kate in forum Cure
    Replies: 129
    Last Post: 02-12-2014, 10:13 PM
  3. Working to Walk 2013 Live Blog!
    By GRAMMY in forum Cure
    Replies: 15
    Last Post: 10-25-2013, 07:16 PM
  4. Live Blog at Working 2 Walk 2012!!
    By GRAMMY in forum Cure
    Replies: 61
    Last Post: 11-19-2012, 11:58 PM
  5. Wise Live at Working 2 Walk!
    By kate in forum Cure
    Replies: 22
    Last Post: 09-03-2009, 01:42 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •