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Thread: Live from W2W 2007!

  1. #1
    Moderator kate's Avatar
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    Jan 2002
    bellevue, wa, usa

    Live from W2W 2007!

    Okay sports fans . . . here we are in the Atrium Ballroom at Ronald Reagan International Trade Center in DC.

    Marilyn Smith is standing at the podium, saying thanks to us for showing up--
    back at you, Marilyn, times 1,000. She's describing the beginnings of this event . . . a band of grassroots activists having a one-day event here in DC, the spring after Christopher Reeve passed.

    So, we're here now for the 3rd straight spring . . .Marilyn is calm and composed and articulate. She just said that the u2fp board has jointly volunteered more than a thousand hours to make this morningn possible. Quotes CR:

    Nothing is impossible.

    We're here today because we didn't accept the grim forecast. We're the fortunate ones, because we've been able to take advantage of what is possible. It's our job as advocates to educate the public, to talk with our scientists, to educate ourselves, to communicate with the media, to communicate with our politicians, to spread the word that a cure is possible, and it's imperative to find it. No one should have to live with paralysis.

    You're the leaders of the cure movement.

    We've been quiet for too long.

    I've seen firsthand the impact that a 25-yr-old makes when he looks eye to eye with a legislator, and believe me, it's a lot more powerful than 100,000 emails.

    We have to support our scientists, we have to support those who fund the research.

    -----She closes and turns it over to Susan Maus. Susan floats over in her power chair, looking amazing and serene as always. Actually, I heard last night that she and Marilyn were kind of frazzled, but something magic must have happened during the night.

    26 different states are represented, along with people from Australia and France. [shout out to Dogger and carbar]

    Telling us about Bob Mulcahey's book called "Bridges to Hope," which grew out of the Wall of Hope project from last year.


  2. #2
    Senior Member
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    Sep 2005
    In your nightmares
    Anyone going to post pictures or video from the rally??

  3. #3
    Moderator kate's Avatar
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    Jan 2002
    bellevue, wa, usa
    Now Dr. Juanita Anders takes the podium . . . her subject from the schedule is LIght Therapy--A non-invase emerging therapy for treatment of spinal cord injury.

    We have a giant screen up with [gahhh! powerpoint slides!] side note: I make these powerpoint shows for a living. I have a serious love/hate relationship with them.

    New slide: Shows that the first paper on light therapy was published in 1966, says that the therapy has been slowly coming into its own . . . used to ttreat chronic non-healing wounds, like in diabetics.

    Question is, how can light be applied to the spinal cord? They got physicists from the FDA to help them figure out how deeply light can penetrate the skin.

    They measured . . . they found that certain wavelengths do get through. Shes talking pretty fast, showing slide after slide . . . 6% of the outside energy gets through from outside to the spinal cords of rats . . . this means that the beneficial effects we know about from light therapy on surface wounds might also work on the cord itself. Non-invasive~!

    Theyve done meticulous experiments on rats, and shown that axons do grow as a result of these light treatments.

    btw--Bruce is video-taping all of this and we'll probably put up a youtube show later tonight . . depends on how much time there is and how well it turns out . . .

    Some things were improved by the growth of those axons due to light therapy, some things not . . . gah, I can't keep up with her. It's like she's talking to a group of students in her lab.

    They've been doing light in combination with OEC transplantaion and shown that it works better than either alone.

    Many slides w/closeups of rats in various stages of experimentation . . . healthy, just injured, under the microscope, post mortem . . taling now about which method of injury to rats

    She got a line item in her budget last year from DOD to look at chronic injuries . . they started in February to try to find bridging methods to around scarring, has seen that axons will try to go around the injury site . . . should have results from this series of experiments soon . . .


  4. #4
    Kate, please continue posting updates. Feels like a little part of me is there with everyone else.


  5. #5

    Thumbs up

    You are great! It can't be any better than this. lol ty ty kate. manouli

  6. #6
    Moderator kate's Avatar
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    Jan 2002
    bellevue, wa, usa
    Stephen Davies from Depatment of Neurosurgery at University of Colorado, Denver.

    British accent . . .

    New Spinal Cord Cells and Molecules for SCI Repair is the title of the talk.

    Says he's going to start with an overview. Showing pictures of what he calls "glial architecture", the support system that grows up around axons . . . this is the white matter that grows up around an axon. The image is like an almost crystalline structure, and it's what we need to regenerate if we want signals to pass up and down the cord.

    4 main theories about why axons don'et regenerate

    1. Neuronal limitations
    2. Lack of growth support in adult spinal cord
    3. Myelin associated inhibitors
    (extreme measures is a movie about this, with gene hackman and hugh grant)
    4. Glial scars create physical and lmolecular barrier to axonal regeneration

    #4 is where he's focused

    They make a transectional injury in an adult rat's cord at C1 C2. They translplant adult sensory neurons to the area after the injury, and do it so gently that no no new damage is caused. Got a lot of neuron growth.

    Showing pictures of astrocytes, star-shaped cells and talking about how to make the environment more friendly to growth . . . showing axons heading toward the scar . . . scar tissue repair strategies:

    1. suppress or breakdown the scar and the inhibitors

    2. Replace lost support cells to "bridge" axon growth across the injury site.

    To suppress scar formation, they 're trying to figure out how to use Decorin, which is produced by our own bodies "in bucketfuls".

    Start with injecting saline + decorin into the injury site, which keeps the scar from forming. This keeps thie inhibitory cells from filling up the injurty site, which means that the neurons can grow across it.

    He's named 6 specific inhibitor types and how much each one has been decreased . . . ranges from 44 to 89%. BIG success.

    How about using Decorin to break down OLD scar tissue? Hello, chronics!

    That was their next move . . . also shown to be successful

    So then, which cell type do you want to use to bridge the injury site.

    CNS-originated cells: they're looking at Glial restricted precursors.

    He has a slide up that shows ESC leads to NSC leads to Glial Restricted precursor which leads to type 1 astrocytes and type 2 astrocytes

    The type ones have low inhibitor levels withch are high in growth factors and highly supportive of axon growth and type which have high inhibirot levels low in growth factors

    type 1s dramatically change the structure of the injury cite

    the axons grow across the injury site "robustly" after it's been bridged with type 1 astrocytes . . . 66% after 4 days. . . no other bridging factors

    sorry for the skecthiness of this! again, bruce is making a video,which you'll get to see as soon as we can get it up . . . GREAT stuff . . .

    They also made the rats cross a little ladder . . . the ones treated with the type 1 astrocytes were stars . . . 9 out of 9 were back to normal on this exercise after a month.

    The point is that it's critical to get the exact right KIND of astrocytes into the cord. You can't just put embryonic stem cells in . .

    Next Phase:

    Type-1 astrocytes combined with Decorin are new, promising repair strategies for both acute and chronic spinal cord injuries. But pharmaceutical grade human decorin is already available

    Must develop himan tupe 1 gda cells and

    then test, then do the human clinical trials.

    The video of Dr. Davies talk is now posted in another thread here:

    Last edited by bruce; 04-29-2007 at 03:02 AM.

  7. #7
    Moderator Obieone's Avatar
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    Aug 2001
    OMG this is awesome Kate ....... thank you so much ......

    ~ 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

  8. #8
    Moderator kate's Avatar
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    Jan 2002
    bellevue, wa, usa
    Next up, Dr Dietrich from the Miami Project

    Has an image up of a a puzzle . . . talking about all the pieces

    can we protect the cord?
    can we repair it?
    can we retrain it?
    can we improve quality of life while this is all going on?
    can we educate more people to help in all of the above?

    Puts up a list of things that have been tried and were not successful. Bleah.

    Talking about using hypothermia to protect cords with new injuries.

    Forgive me if you care about this . . . after listening to the last speaker, it's kind of tedious.

    Now has a list up of the kind of cells that could be used to promote regeneration. Same old list, much less detail in this presentation than we just got.

    Now talking about using hman Schwann cells, which:

    promote regeneration of axons
    produce groth factors
    restore axonal conduction
    enter the cord in big numbers
    are readily accessible
    can be obtained in big numbers
    can be geneticall engineered
    last one I missed, sorry

    has a picture that shows what happened when schwann cell plus ensheating glia are used . . . they do get neurons across injury sites.

    now what about schwann cells plus growth factor plus rolipram . . . the contused rats got to 70% of normal walking function

    says the question now is how, when, and where to administer the growth factors . . . lists a half a dozen types.

    A viral vector is a genetically modified virus--they're using them to send the good stuff where we need it to be. He just said they did a successful study on people with TBI and reversed some of their cognitive impairment using these things . . . are now looking at how to use them in chronic sci.

    He just said that a lot of people want to know why this field is not moving faster . . .there is a lot of basic biology that we don't yet know . . (sigh)

    Speding up now, though, because new technology makes it possible to check combinations must faster.

    talking about combination therapies . . usual list

    Clinical Research programs at Bantle Rehab Research Center and VA SCI Service

    preserving function, male fertiility, bowel and bladder, are some areas

    showing video of people in lokomats, using rehab equipment

    neurogenic pain--they've seen bad results in rats after injecting neural stem cells . . .no functional return, evidence of more pain . . . nightmare scenario.

    talking about a clinical trial network, but Wise has been talking about that for the last 5 years, so kind of a yawn . . .

    Cethrin . . no adverse effects in the Phase 1, so it's going forward.

    ICCP . . .check this out: the International Campaign for Cures for Paralysis

    This part of the program feels very general and not that exciting . . . I'm probably not being fair to him. He just showed a slide with arrows stretching out to 2010, keeps emphasizing that we have to be very careful, very critical . . . okay then.
    Last edited by kate; 04-22-2007 at 11:34 AM.

  9. #9
    Outstanding Kate!!!!!

    (I figured MP wouldn't really have anything new to yield)
    And the truth shall set you free.

  10. #10
    Moderator kate's Avatar
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    Jan 2002
    bellevue, wa, usa
    Gah, I just accidentally deleted a whole post with the blow-by-blow from John MacDonald, who is currently at Kennedy Krieger . . . luckily the part you just missed is old news. Boils down to this: exercise is good, sitting around is bad. I didn't need 20 minutes to say that!

    Gets Pat Rummerfield up on the stage. Guy in a brown suit, walking with a bit of a limp. Was ASIA A for years. Injury at C4. Wow, the image on the screen is Pat's MRI. Doesn't look so good. Shows a cross section with a blob of scar tissue.

    Pat is now ASIA D. His sensory score is 5% of normal, so he has big impairments. MacDonald is saying that this is doable for 80% of people with SCI. The message is to make use of what's been learned .

    Sue says that this past week, using things she learned from him, she was able to brush and floss her own teeth without using her arm support for the first time in 6 and a half years. You go, Sue!

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