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Thread: Live from Working 2 Walk 2010!

  1. #31
    Quote Originally Posted by john smith View Post
    The first is me and Leif
    The 2nd is Kate blogging
    The third is Leschinsky and her friends Jub with Dr. Young
    Thanks for the pics John and thanks for blogging Kate!
    “As the cast of villains in SCI is vast and collaborative, so too must be the chorus of hero's that rise to meet them” Ramer et al 2005

  2. #32
    Senior Member KIM's Avatar
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    Can anyone ask Dr. Stephen Davies when is he starting trials?

  3. #33
    Senior Member tarheelandy's Avatar
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    Thanks Kate! Wish I was there!

  4. #34
    Senior Member kate's Avatar
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    Friday morning

    Marilyn gives a very warm (and well-deserved) intro to Donna, who has made this conference into a full time job for the last 6 months. None of this would be happening without her.

    Donna Sullivan: i think I was just promoted from bulldog to worker bee!

    Introduces Mark Smith, who's doing the keynote speech this morning. He was born with severe cerebral palsy and was not supposed to be able to do a thing ever. Ever.

    He's wheelchairjunkie.com guy . . . check him out there.

    How are you all this morning. I'm mark Smith. You're not paralyzed.

    He's talking about how people who suffer from paralysis from all diffferent causes so rarely get together.

    Think about the famous people associated with each kind paralysis -- Reeve for sci, Fox for Parkinsons's . . do you see them together? The AARP has 35 million members, and that's because they include everybody over 50. What if we could form an organization that included all of us? That didn't require a certain cause of paralysis to get in the door?

    So what's a guy with CP doing here? Paralysis isn't condition specific, it's human specific. There are so many ways that what we face is exactly the same.

    Imagine that I and a guy with SCI go interview for the same job . . . do you think the HR person is going to say, geez today I had a guy with CP and a guy with SCI come in? No.

    He's gonna say, today I had 2 dudes in wheelchairs show up.

    Think of the power that we could have if we were all united . It would be a major paradigm shift. It would change the rules.

    In 1952, 58000 people got polio in the USA . . it's not a big number. Right now 11 million people have cancer. The jobless rate right now is 13 million people. . . how is this number one news story every single night? Why is it not on the radar that almost that many have cancer?

    How was it in 1952 that polio, with only 58,000 cases, was such a national priority? Go back to 1932 and look at FDR. He went on the radio and asked that every single person in the country donate a dime. 2.7 million letters with dimes arrived within a week.

    The president made polio a national priority. In 1956 we had a vaccine. by 1960 the polio virus was gone in the USA. An astounding feat --

    And yet as we sit here this morning there are a hundred times more people with paralysis than had polio in 1952 . . . why is it not a priority?

    Revolutions don't occur based on justice. Revolutions occur based on hope.

    I'm sitting here looking at people with hope.

    We're not looking a cures for individual conditions; we're looking at cures for a human condition (called paralysis).

    Wow, great guy!

  5. #35
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    Thanks Kate for asking those questions. That is what I thought. Just wanted to check because I really would like to be part of these new clinical trials. I am doing a vibration plate trial, at Mayo, for bone density. The lead doc. in that is leaving so I don't know how long or if the trial will continue.

    Agree on the great guy.

    kathy

  6. #36
    Senior Member kate's Avatar
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    Frank Reynolds (inVivo Therapeutics):

    He's setting up his laptop . ..

    I'm Frank Reynolds, paralyzed in 1992 as a result of surgery, spent 4 months in the hospital. A few years later I realized that medical community wasn't going to help me. Was told, nobody ever recovers from your injury, get used to it.

    I'm gonna have to get myself fixed.

    Next day I bought a laptop, spent 2 years studying. Spent more years in a pool, my theory was that if I can move my legs there must be something going on there. In 2002 there started to be some good papers about physical activity and recovery. This was before the lokomat.

    I was just happy to be back in my life
    Kind of begged my way into they Ivy League
    Got a masters from Penn
    Director of global business development
    2005 asked to go to MIT for a year, really excited about the idea of taking a year off to study
    First thing was I met Bob Miner, who said, let's find a way to cure sci
    Formed invivo with him, he's a living legend
    Our approach is very different, we're not about getting monkeys running

    We look something beyond the cellular thing . . .yesterday 2 different people said that curing sci is now an engineering problem
    that's exactly right

    We use an anaolgy. When the planes hit the buildings on 911, the buildings stood, it was the fires that took them down. When the cord is damaged, the body is still okay . . . it's the secondary damage that takes it down.

    Looking at the list of very accomplished people who work for inVivo . .. check them out at the website I linked to above. These guys are real.

    Reynolds is talking about awards: I got an award irish life science from the president of Ireland, featured in march 200 and october 2009 issues of inc mag
    My partner Robert Langer, won the millenium prize, better than the Nobel.

    MAN THIS GUY TALKS FAST. I NEED A PAUSE BUTTON FOR HIM


    Their plan is to intervene before secondary injury causes the patient to be in a wheelchair for life -- this is obviously for acutes, he's got things to say about the chronic problem too -- later

    showing a video of an actual surgery, extreme close up of needles and an open wound.

    OY

    This kind of intervention needs to happen within the first 24 hours after surgery

    The next generation technology will inject the hydrogel . . . we can mirror the unfolding inflammation with a timed release, defeating secondary damage as it tries to occur

    Just published in the journal of neuroscience


    now i'm going to talk about something that everyone thinks is crazy

    if you can cut that scar tissue out, you can be in business
    we went down to the miami project . . you've got a a structureal problem
    if you can cut out the scar tissue, take all the bad out, bridge the healthy tissue . . .

    showing a monkey, first paralyzed, then 5 weeks later running around. he got a scaffold with no drugs and no cells.

    human pilot q1 2011
    10 acute contusion sci patients, sci shepherd center in atlanta

    5 years of our work in 20 minutes! !!

    Question: Have you thought about doing scaffolding without cutting?
    The

    Question: How much of the effect of your scaffold is antiinflammatory? How do you see this technology moving into chronics?

    It's very important to understand that we're focused on the inflammation in acute sci. When we get to treating chronics, we'll rely on the use of cells. You're going to need a scaffold to seed the cells onto. Davies says that absolutely that we're going to need a scaffold.
    Reynolds says that the beauty of being a company is that we can bring all the disciplines together.

    Will file with the FDA in December.

    (Okay, I need to stop and make sense of this; it's very hard to keep up with the speed of the diction & constantly changing subjects & level of detail.

    Reynolds is a guy who had an sci himself due to a surgical mistake. He was lucky enough to have some return, made the most of it through ridiculous amounts of physical therapy, much of which he invented himself. Once he was mobile again (which took many years) he went back to school and got on with his life. He's a Boston up-from-scratch businessman, or at least that's my read. Very smart, very forceful, very brash. He's a big guy with a bald head wearing a dark suit.

    He happened to meet a guy named Bob Miner when he was in California, and they decided to take on the challenge of SCI. The approach they took is figuring out a way to stop the secondary damage that causes most of the crap-ola that is SCI . . . lost sexual function, pain, lost mobility . . . these things result from secondary damage. Could they make a product that was not meant to REPAIR that damage, but to PREVENT it from happening in the first place? They think they have.

    Think of this product as the sci version of those surgical sutures that are biodegradable -- no one has to take them out. When it comes to chronics, the idea will be as follows:

    1. Use this polymer scaffold to bridge across the site of injury

    That's the acute plan. Just the scaffold, using polymers already shown to be safe in humans. It's been remarkable in acute animal models, as the videos of monkeys he was showing demonstrate.

    2. Use cells (iPS or HESC) to promote growth, remyelinate, and/or regenerate in combination with the scaffold; do this after having cut away the "scar" in something analogous to the way oncologists cut away the cancer.

    That's the chronics plan. It's "a few years" away, as best they can figure.)

    PHEW.

    You can see a video of him here.

  7. #37
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    Thank you very for this fantastic report.

    My regards from Hamburg

    Günther

  8. #38
    Senior Member Foolish Old's Avatar
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    Frank Reynolds

    I believe this is the same gentleman previously discussed here.
    Foolish

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

  9. #39
    Senior Member kate's Avatar
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    Lindsay Huisman, who has the world's most soothing voice.

    She's done fundraisers for the cure, including one in Seatle last winter, where she and I and Marilyn did the Rock and Roll marathon . . . okay, she did the whole marathon, running, the rest of us did half of it walking. Way fun.

    Started in home health and respite care, wanted to help people find resources, moved into sales, education, advocacy. Was for 4 years a suicide prevention counselor.

    Worked at a center in NYC around 9/11 . . . what I found was that physical health is intricately linked to mental health.


    Sedentary lifestyle is bad for AB people, and bad for sci people too. We know the drill
    diabetes, heart disease, sores, weight gain

    Are you physically ready for trials?
    how can you be sure you'll meet the criteria to be included?

    no active infections or pressure sores,
    no metabolic condition,
    no severe osteoporosis, extensive muscle atrophy,
    no prior cell or tissue transplants

    (says that someone suggested they might just not tell about a previous cell transplant . . . NO -- you can't keep information from your doctors or from scientists. ever.)

    ultimate goal is be ready to walk . . .
    always good nutrition, weight maintenance
    healthy shoulders for weight bearing -- there will be a process that requires load bearing in the beginning
    able to tolerate being upright
    be physically fit for endurance and general health

    take advantage of complementary therapies, which are things used alongside standard medical care, like yoga, meditation, etc.

    so . . . staying in as good a shape as possible will do 2 things. obviously one of them is being a candidate for therapy. the other one is better quality of life, which = greater independence, better mental outlook, having peer support ..

    unless you're buying a snuggie, one size doesn't fit all. what works for one person won't be right for someone else -- but each of us can figure out a routine and put the pieces together

    routine is key; find equipment through craigs list, or adaptive sports sites
    community matters: you need others who are in it with you
    set goals, and figure out what motivates you.

    long term goal: WORKING 2 WALK

    some resources

    happynews.com
    scottchesney.com
    attitudeisaltitude.com
    values.com/free-inspirational-stories

    basically, she's saying that it helps to surround yourself with positive ideas, positive people, and positive goals.

  10. #40
    Thanks so much Kate.

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