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Thread: Live from Working 2 Walk 2011!

  1. #11
    Moderator Obieone's Avatar
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    Thank you Kate - so much !! It feels like a conversation when you blog - like we're sitting next to each other commenting discussing and nodding our heads !! Keep up the great work

    Every year I say - next year - so I'll say it again - "maybe next year" ...... I'll bring Beth and Linda with me ....and Bente and Jenn and Paul and cass and sci55 and Steven and Cheese etc etc ................ Oy vey wouldn't it be awesome .....

    Obie
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  2. #12
    I am so happy to be here in person this year. I have used this live-blog in the past to follow this meeting. Thank you for live-blogging this meeting so that people who could not make it can share in some of the great feeling this meeting gives. Have a great meeting!

    Best,

    Jonathan Slotkin, MD
    Invivo Therapeutics

  3. #13
    Senior Member kate's Avatar
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    Sue Maus

    Donna saying that Sue first called her in 2007 to see if she'd be interested in helping out at u2fp. Turns out it's not possible to help out "a little bit."

    Sue is a busy advocate who works full time, has raised two daughters, and has a high cervical injury. You're never, ever going to convince her that there's just no time to make a phone call or write a letter or show up.

    Sue: Good morning. Colin and I just celebrated our 25th wedding anniversary, and I'd like to say that he's the reason I can do what I do. Just realized the reason I'm so nervous right now is that my mom is here . . . yeah, Jan! I'm also nervous, though, because this is just so important to me. This used to be like the impossible dream, and now here we are talking about clinical trials.

    Advocacy

    Advocate is a noun -- it's a person
    Advocate is a verb -- it's an act
    either way, it's a powerful change agent . . . it sounds simple but it's kind of daunting, especially at first.

    There are 3 basic styles of advocacy, which you can do in any combination that works for you.

    Community style is somebody who has never met a stranger! What do they do? Make themselves visible and respond willingly to questions. (Little girl who asked why she was in the chair, and after hearing that Sue can't walk, wanted to know why she needs shoes.) It's important to learn as much as you can; in the beginning I only grasped about 20% of what's going on but now I get about 80% of it. That takes time. Our model for community advocate is Joe White, who keeps it casual, real, and effective on a local level.

    Media style is another option. What do they do? They're on the message boards, facebook, youtube, twitter . . . they're doing letters and newsletters, and not because they're great writers so much as because they're passionate. Our model for this is ProfessirX, who got involved with us by posting a youtube of himself doing a rap about Chris Reeve.

    Legislative style is a third option. They're the spreadsheet fans, hard to distract, hard to annoy, good at tracking things, good at staying focused, don't know the word, enemy. The model for this is Leo Hallan, a good friend from South Dakota who is a genius at creating common ground.

    How do you do this? Start with facts, which you already know or you wouldn't be here. Answer people's questions, respond to their objections, lead by example, focus on the positive, involve others, expect resistance and don't let yourself be discouraged. Communicate in multiple ways; be hard to ignore.

    Never give up. Never shut up.
    Anybody reading this blog or seeing the videos later is who I'm talking to.

    Here's a Minnesota quote that I hang onto when I get discouraged. It's from Wayne Gretsky:

    You miss 100% of the shots that you never take.

    Thanks for your courage, and for being here.

  4. #14
    Senior Member kate's Avatar
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    Kickass Advocate Award

    Marilyn is up saying that we wanted Karen Miner to hand this off. She won it last year. She was supposed to be here. She had to cancel at the very last minute due to sci issues.

    That's why we have to do this.

    The winner this year raised $50,000 in the Chicago marathon on his first try. His organization is known as SCI Sucks. That's kickass and that's telling it like is. Geoff Kent!!

    First of all, what I do is nothing compared to what Marilyn and Donna and Sue and everyone involved with this organization does. Thank you for the award but I'm nothing compared to what you all do. So, yeah, the name SCI Sucks came about when I was first injured, a little angry, yeah. There's probably a hundred charities in the Chicago Marathon, and runners can sign up for any one on the list . . . lots of people choose our charity just because of the name.

    We raised $300,000 for research last year.

    All of us know somebody who's injured worse than you. No one is gonna advocate for the person you left behind in rehab who's got it worse than you, has a worse injury, got stuck in a nursing home somewhere. No one is gonna do that if we don't.

    Those of us who can do this -- come to Washington -- need to do it. We're the only population in the world that's ever been. The invention of the plastic catheter makes our lives possible, and we have a responsibility.

    If you know anyone who's doing races, we'd love to have you.

    SCI Sucks!

  5. #15
    Senior Member kate's Avatar
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    Susan Testa: Gut and Digestive Health in SCI

    Marilyn's making a joke about how we really might not want to do this before lunch, ahem. . . but this is an overlooked subject that matters a lot to maintaining your health as an sci survivor.

    Last year I got to speak at a couple of breakout sessions in Phoenix w2w, where we talked about the prevelance of cardiovascular disease in sci.

    This year I'm going to talk about gut bacteria. (woo hoo.)
    This is for everybody, sci or not.

    What is the gut? It's what starts at your mouth and ends at your anus. Today we're going to think about the small and large intestines . . . it's the platform for everything. Each person has their own profile for digesting & processing food, which affects everything from the brain to the immune system.

    The integrity of your gut matters because you get optimal function, and you can protect that integrity. What are gut bacteria? Well, they're called "flora" and the live in the large bowel. Probably about 70% of fecal matter is bacteria. There are more bacteria in your gut than cells in your body. We all have bad and good bacteria . . . usually in a ratio of bad/good = 4/1.

    Lots of people have issues that come from poor gut health that might surprise you -- things that can be mitigated with better gut health. Depression, for example.

    We're supposed to have bad bacteria . . . but we have to manage them, i.e., make sure the balance is right. Things that mess with the good bacteria are antibiotics, stress, sugar, red meat, antacids. You can take (or eat) something called probiotics, which work to make sure you have the good stuff that might have been lost.

    There are 2 main kind of probiotics, several varieties of each, but she's focusing on one variety called lactobacillus acidophilus, which improves nutrient absorption, aids digestion, helps prevent uti's, prevents bad bacteria from going wild, and normalizes cholesterol.

    The other one is biffidobacteria bifidum. which help keep you regular, decrease side effects of antibiotics, manufacture b-complex vitamins, and help you increase absorption of minerals.

    So. Take a freeze-dried probiotic that has the stuff bolded above.

    Whoops, gotta charge up.
    Edited to add: here's a link to her web page where this information is easy to figure out. She really does have a ton of good information for people trying to keep themselves in shape.
    Last edited by kate; 10-16-2011 at 12:27 PM.

  6. #16
    Senior Member kate's Avatar
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    Dalton Deitrich, the Miami Project

    Whoops, missed the intro

    Here's what Dr. Dalton is talking about:
    Areas of research?
    Neuroprotection
    Transplantation and regeneration
    Rehabilitation
    Quality of Life
    Clinical trials
    Next Generation training

    We've been at this for 26 years . . . our model is bench to bedside, bedside to bench.

    based on needs, we do basic science research, which leads to preclinical translational studies, which leads to clinical investigations, which leads to clinical trials . . . the holy grail.

    It's a big puzzle. We've been all over the world, recently returned from places like India and China . . . there are 5.3 million people living with paralysis due to some kind of central nervous system injury.

    Promising treatment list up for about 4 seconds, and it vanishes before I can type it.

    What are some of the mechanisms of cell death? depolarization excitoxicity, ischemia, inflammation and edema . . . what do you do with that? In 1986 I wrote a paper showing that if you reduce the temperature of the brain 2 degrees in a rat experiencing cardiac arrest, you get a better outcome.

    In 2000 they published a paper showing that if you cool rats after thoracic sci, they get 32% more recovery. In 2009 they published another one showing that it works after cervical sci, too . . . this work has been replicated all over the place, which means it's reliable.

    A problem is that there are no clinical guidelines or protocols establishing efficacy . . . but because of media attention people started using it. Showing pictures of Kevin Everett, who was injured in September 2007. He got an iv infusion of cold saline about 15 minutes post injury. Next thing I knew I was getting a call from Sports Illustrated. It's great, but it's just one guy and doesn't mean anything.

    What you need is a controlled clinical trial, where some patients get the therapy and some don't. We've been doing this at Miami for patients who can get to us within 6 hours post injury. We did 14 patients in a safety trial -- saw no evidence of risk factors. (Clinical Application of Modest Hypothermia after SCI)
    You use a vascular catheter that cools the blood to any temperature you choose, and when it's time to re-warm the patient, that's easily done.

    The Asia A conversion rate is 43% to Bs and Cs. They're very optimistic and now planning a bigger trial called ARCTIC . . . it will cost 10 to 12 million dollars. NIH liked it but didn't fund it. It's a five-year project. They're going to re-write the grant and re-submit it.

    Okay then.

    What about repair studies? What about replacing lost neurons? They're focused on "helper cells" -- made to change the environment to make it more permissive to regeneration. Schwann cells are myelinating cells taken from the peripheral nervous system, which come with a lot of solid preclinical data indicating that they'll be effective.

    Why that one?

    It releases growth factors, it can re-myelinate axons that have lost their myelination. So, its task is to do the same things that Geron's OPC's are doing, except it's your own cell. We can take one of these from you, culture it for 3 weeks, and put it back into your body without worrying about your immune system rejecting it.

    But they had the rats walking "beautifully" in 2004. What has happened since then?

    You can now use viral vectors to turn these cells into "super cells" -- which means you can get the Schwann cell to carry the 3 kinds of growth factors that have been shown to work.

    So, how do we get to the bedside? We felt the need to do some careful studies with pigs. We've been using the Geron injector . . paper published this year by Guest et al on how this worked. They also did some primate studies with extremely positive results. They submitted their IND to the fda last month. Picture of 4 scientists with a stack of paper about 2 feet high.

    They also have plans for 3 kinds of future IND submissions: two of which are for chronic. We're really proud of this.

    NIH News blueprint neurotherapeutic network

    And at their website now you can read about other projects underway.

  7. #17
    Senior Member kate's Avatar
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    John Slotkin and Frank Reynolds, INVIVO

    Jonathon Slotkin is the medical director at InVivo; he's on the television a lot talking about sci

    Yay, gives a plug for the live blog! Thanks.

    You're going to get the first public announcement of an excellent piece of news.

    We've just appointed Ed Wirth as our chief science officer. He's coming to us from Geron, where he'll be leading us into human clinical trials. We also have Reggie Edgerton from UC Irvine.

    We've submitted an IND to the fda 2 months ago.

    There are 2 parts to an sci -- the primary and the secondary injuries.

    Hall E springer J neuroprotection and acute spinal cord injury 2004

    There's a well known cellular inflammatory response in the days and weeks following injury. Lots of the people in this room have been working on a long list of potential treatments . . . here's the list

    OEG, stem and progenitor cells, inhibition of NOGO, growth factors, pharmacologic strategies, activity based strategies, macrophages, schwann cells, etc.

    This is an engineering problem, though. It's an engineering problem because there's a physical hole. It's a big leap to ask cells to do magic, to do a leap over a hole . . . we have an inhospitable biological environment. It's our belief that engineered biodegradable scaffolds might be able to do the job. Paper on this is published and free (Teng et al 2002)

    The scaffold had components made for both gray and white matter to attach to. That first formulation didn't work, but it led to some fantastic results.

    Showing a slide about GAP 43 immunocytochemistry, where they used the scaffold along with neural stem cells. That worked. Ah, showing a video of a poor brown sequard-lesioned rat trying to walk. Then another one doing much better, after treatment with scaffold + neural stem cells.

    Good slide showing paper after paper about polymer scaffolds, rising into a pile on the screen. I'll get the list from him later.

    Saying that primate studies must be reserved for only the very most promising of therapies and limited to thoracic hemi injuries. Courtine, edgerton in 207 published a paper about how experimentation in primates can expedite translation into humans.

    Lots of you know that everything seems to work in rats . . . but what will work in primates will be much more likely to work in humans. When I'm in the clinic, I always bring it down to one question. What would I want if it was my back?

    So.

    They did a study with biodegradable polymer scaffold at St. Kitt's biomedical research center involving African green monkeys. They publisshed the preliminary model pritchard slotkin langer 2010. They've done about 40 animals.

    Some controls, some scaffold alone, some scaffold plus growth factors, some injectable, drug-releasing scaffold. They did a wireless EMG application 4 weeks prior

    Okay . . .

    He's building up to something here.

    He's saying that treatment with methylprednisolone has been identified as involved in serious side effects, but we wanted to use it anyway because it does have good outcomes too.

    Reggie Edgerton's wireless EMG application allowed them to capture kinematic data about swing and stance pattern of animals before and after treatment and injury. The data you can capture is astonishing. The animals that got the injectible scaffolding are looking good. This is going to turn into something.

    okay, I have to clean this up a lot, but need to post it so I can get the panel discussion . .
    Last edited by kate; 10-16-2011 at 03:04 PM.

  8. #18
    Senior Member kate's Avatar
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    Panel with Paolo Cipallo plus Dietrich, Slotkin, Reynolds

    Paolo wants to know if they think we're supposed to get excited by hearing about hypothermia? W here is the chronic work? There aren't any acutes in the room. I don't get it.

    Slotkin: Well, it's constantly on our minds -- for one thing because investors know that there are a lot more chronics than acutes. We do acutes first because those models are more well-established and easier to fund. Right now we're raising a colony of chronically injured animals.

    How many?

    Right now just in the pilot stage with a couple of hemisection (not contusion) thoracic. Also what about hypothermia, since that was brought up? That football player didn't just get hypothermia, he got rapid decompression, because he was lucky enough to have a spinal surgeon standing next to him when he got hurt. So we don't really know what it was that helped him.

    Dietrich: We did show that Schwann cells can be transplanted 6 months post, and have published rat studies where the treatments were delayed. If you come to the Miami project, you'll find the whole first floor full of people in chairs -- we have targeted chronics, we will target them. I hope you get it.

    Sorry, I don't. Why is there not 50% of the work being done on chronics? I would say it's like 95% of the work is being done on acutes. I have given you money before, but I'm not doing that anymore. It doesn't make sense. I don't get it.

    Dietrich: Our strategy is to go to the fda and get the easiest thing done first, according to them, and move forward into chronics as quickly as we possibly can.

    Seems like hypothermia is a no-brainer . . . didn't we know about that since 1976? I was injured 3 years ago and nobody offered it to me. Congratulations to you, Dr. Dietrich, for making that sports doctor aware that it was even possible. I just want to underline the fact that we need to move this field forward a lot FASTER. If there's anyone from the fda in the room, I hope they're listening.

    Dietrich: Well, hypothermia has a lot of risk factors, and we've tried to refine the treatment . . . what kind of technology do you need to make it safe? It takes a long time . . .

    But cardiac patients already get hypothermia. It really feels like there's not enough aggression.

    Slotkin: Well, there's a paper in the NE Journal of Medicine about cardiac patients being taken off that protocol due to safety issues . . .

    Gah, need to stop. I want to keep doing this. Next is smaller workshop rooms, where I could ask questions if anybody has one.

  9. #19
    if i were there, id want to ask wise young to tell me anything he could about the hong kong patients. specifically the one that is coming up on a year out.

  10. #20
    Quote Originally Posted by kate View Post
    Jonathon Slotkin is the medical director at InVivo; he's on the television a lot talking about sci

    Yay, gives a plug for the live blog! Thanks.

    You're going to get the first public announcement of an excellent piece of news.

    We've just appointed Ed Wirth as our chief science officer. He's coming to us from Geron, where he'll be leading us into human clinical trials. We also have Reggie Edgerton from UC Irvine.

    We've submitted an IND to the fda 2 months ago.

    There are 2 parts to an sci -- the primary and the secondary injuries.

    Hall E springer J neuroprotection and acute spinal cord injury 2004

    There's a well known cellular inflammatory response in the days and weeks following injury. Lots of the people in this room have been working on a long list of potential treatments . . . here's the list

    OEG, stem and progenitor cells, inhibition of NOGO, growth factors, pharmacologic strategies, activity based strategies, macrophages, schwann cells, etc.

    This is an engineering problem, though. It's an engineering problem because there's a physical hole. It's a big leap to ask cells to do magic, to do a leap over a hole . . . we have an inhospitable biological environment. It's our belief that engineered biodegradable scaffolds might be able to do the job. Paper on this is published and free (Teng et al 2002)

    The scaffold had components made for both gray and white matter to attach to. That first formulation didn't work, but it led to some fantastic results.

    Showing a slide about GAP 43 immunocytochemistry, where they used the scaffold along with neural stem cells. That worked. Ah, showing a video of a poor brown sequard-lesioned rat trying to walk. Then another one doing much better, after treatment with scaffold + neural stem cells.

    Good slide showing paper after paper about polymer scaffolds, rising into a pile on the screen. I'll get the list from him later.

    Saying that primate studies must be reserved for only the very most promising of therapies and limited to thoracic hemi injuries. Courtine, edgerton in 207 published a paper about how experimentation in primates can expedite translation into humans.

    Lots of you know that everything seems to work in rats . . . but what will work in primates will be much more likely to work in humans. When I'm in the clinic, I always bring it down to one question. What would I want if it was my back?

    So.

    They did a study with biodegradable polymer scaffold at St. Kitt's biomedical research center involving African green monkeys. They publisshed the preliminary model pritchard slotkin langer 2010. They've done about 40 animals.

    Some controls, some scaffold alone, some scaffold plus growth factors, some injectable, drug-releasing scaffold. They did a wireless EMG application 4 weeks prior

    Okay . . .

    He's building up to something here.

    He's saying that treatment with methylprednisolone has been identified as involved in serious side effects, but we wanted to use it anyway because it does have good outcomes too.

    Reggie Edgerton's wireless EMG application allowed them to capture kinematic data about swing and stance pattern of animals before and after treatment and injury. The data you can capture is astonishing. The animals that got the injectible scaffolding are looking good. This is going to turn into something.

    okay, I have to clean this up a lot, but need to post it so I can get the panel discussion . .
    Thank you Kate. These guys will get it done before anyone else..
    Donnie: Dr. Xiao, What are your thoughts on a cure/combination therapy for SCI's??
    CG Xiao: Donnie, I don't want to disappoint you, but I think it is impossible to restore the continuity of the cord or "bridge the gap" in the near future, let's say: 50 years. Dr Wise Young has been my most respected scientist in SCI. He has dedicated and contributed to SCI no other can match.

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