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  1. #1
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    bellevue, wa, usa

    Live from Working 2 Walk 2011!

    Hi, everybody

    I can't believe it's here again, can't believe they've pulled it off again, can't believe I actually made it. The 5th year . . .

    But, here we go.

    It's Saturday night and people have been arriving for the last 24 hours or so; we're at a Hilton hotel near Bethesda, MD. This is one of those hotels where the rooms are arranged to rise up around a big open space; when I arrived there was a wedding party going on in that space, with tons of guests in formal wear and candles and flowers all over the place, canned music playing so loud you could hear it through all the halls.

    There are people here from all over the place -- 186 of 'em!! -- many from the eastern seaboard, but also from all over the USA as well as Ireland, the UK, Spain, France, Italy, the Netherlands, Japan, and Nepal. Kind of a destination wedding of sorts, eh?

    Here's a heads up about what to look for tomorrow:

    Presentations by Douglas Fields from the NIH, Richard Garr from Neuralstem, Joseph Gold from Geron Corporation, followed by a panel discussion with one of u2fp's board members, David Zacks . . . that's all before lunch.

    Gotta love this.

  2. #2
    Have a great meeting and thank you in advance! last year you were fantastic, we were not there but it seemed to be!

  3. #3
    Really looking forward to your posts, Kate
    "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

    Don't ask what clinical trials can do for you, ask what you can do for clinical trials. (Ox)
    Please join me and donate a dollar a day at and copy and paste this message to the bottom of your signature.

  4. #4
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    bellevue, wa, usa

    15 minutes to go

    Outside in DC it's like 70 degrees F, and here we are inside, the usual hotel "ballroom" (which I never understand cause what sort of ball could you have in a room with carpet on the floor?) . . . in front of me is a platform with four chairs for the panels and a lectern off to the side for the speaker. A pair of giant screens are off to the left and right. The floor of the ballroom holds dozens of round tables with white tablecloths; we get ice water and hard candy to sustain us, and every chair has a copy of this year's program.

    Which I read last night, and I gotta say, is a big leap even over last year. u2fp has found its voice. For those of you who weren't around when this thing got going, it started when a few people from CareCure -- devastated after Chris Reeve's sudden death -- asked themselves who would take his place. Who would speak up for a cure?

    Us, was the answer. u2fp started with a small rally in a park in DC in the spring of 2005, and in 2006 the first Working 2 Walk was held -- the idea was to create a space where scientists could meet with one another and with the paralysis community, where real information could be shared and --hopefully!-- people could become inspired to advocate on their own behalf.

    Gotta get more caffeine before we start . . .

  5. #5
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    bellevue, wa, usa

    Opening Remarks -- The Legacy of Justin Dart

    Marilyn Smith, who was one of the CC members who was at that first rally 6 years ago, is now the executive director of u2fp . . . which sounds, believe me, a lot more high rent than the actual position has been, at least so far. (Which is to say, she barely gets paid.)

    She's at the lectern, asking for quiet.

    We have a very, very full schedule and want to make sure our speakers get lots of time . . . coupla changes:

    The Geron speaker will be Dr. Joseph Gold and not the person named in your program. . . we're all eager to hear what's going on with their clinical trials.

    Also our patient advocate will not be Karen Miner, but instead David Zacks.

    This is our 6th event, and it's great to be back in DC, where we haven't been for some time. Thanks to our sponsors, who make this event affordable to anybody in the sci community who wants to be here. Please visit their displays and say hello and thanks. None of this would be possible without them. (People clap)

    Our speakers are very busy people; they take time from very demanding schedules to show up here, and we really appreciate the value they bring to this conference. They don't get many opportunities to talk to the people they're trying to cure. Just as you look forward to meeting them, they look forward to meeting you. Reach out to them, engage them in discussion, take advantage of this chance. It's unique.

    Finally, the army of volunteers . . . u2fp is pretty much a volunteer organization and something of a family operation. We have Sue Maus and the tribe from Minnesota, more of them every year. An incredible family and an incredible group of people. Also Donna Sullivan, who's here with her kids Melanie and Matt, working tech and doing photography . . . and many others.

    We have a pretty amazing group of international visitors here. I was amazed at the distances people were glad to travel to be here.

    Japan Spinal Cord Foundation
    PT from Nepal
    The European contingent, who are extremely knowledgeable

    I flew out here from Oregon on Frontier airlines. Appropriate, because I was going to a conference of pioneers. Curing sci is the holy grail of neurological research. As pioneers we can learn from this man named Justin Dart . . .

    Anybody heard of him? one person
    I'm surprised. He was a world-reknowned disability activity, the father of ADA. He described a revolution of empowerment, as one that eliminates obsolete thoughts . . . it's thanks to him that many of you were able to travel here, that you were able to ride on a ramp into the restaurant and bar. He was born into wealth, went to 7 different high schools and didn't graduate from any of them. Three events changed his life. At 18 in 1948 he got polio, was sent to a hospital in LA, given little time to live. He was overwhelmed by the people he met in that hospital. The 2nd thing was his discovery of Ghandi, and the idea of finding your own truth and living it. He went to college, went into business and built several successful companies. The third thing was a visit in 1969 to Vietnam to see children with polio. He thought he was going to see a rehab facility, but what he found was kids left to die on floors.

    He and his wife decided to spend their lives on creating a revolution of empowerment of the disability community . .. in 1988 he was appointed to chair a national task force on the rights of disabled people. The ADA was enacted two years later. He embraced the principle of inclusiveness as a means to empowerment. He gave credit for everything he'd been and done to the others who reached out to him and those who joined him. At his death, he was still calling for revolution.

    I think that if he were alive today, he'd be joining us. He'd be asking for the world to see that this is a curable condition, and he'd be looking for others to join the revolution. This room is full of pioneers.


    She's introducing Donna Sullivan . . . another sci mom. We affectionately call her the bulldog, because she never, ever gives up. She worked extremely hard this year to put together our program, which she's about to describe.

    Donna comes up and says welcome & that it's a privilege to be here.

    We've evolved a lot over the last few years. In the beginning this was all so opaque to me, and I still can't believe that we've come to a place where we're talking about clinical trials. Whatever your talents are -- and I came to this with no background, certainly in neurology, we just need to pull them together.

    The first time I heard about Douglas Fields was from our friend Martin (Irish sci), who told me about his book -- which is terrific and reads like a novel.

  6. #6
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    bellevue, wa, usa

    Douglas Fields

    I'm delighted to be here, thank you all.

    This morning I want to talk about Glia, which I call the other brain. First what is it, then what's going on in my lab.

    We think of brains and cords as an electrical circuit, but the nervous system doesn't work like wires . . . and maybe this analogy has led us astray. Slide up of Dr. Cajal, who kind of invented this metaphor. New slide about the electron microscope, and a moving image of an electron microscope image zooming into the brain -- a dense gray mass -- and he says that only 15% of what we're looking at is neurons.

    The rest is glia.

    Neurons and glia both form networks; the higher you go up the evolutionary tree, the more glia . . . whoa, showing Einstein's brain, which has been shown to have had more glia than the average brain.

    List of glial functions, which go by too fast to catch, sorry . . . so why did we ignore them for so long? Needed fluorescent imaging techniques to really see them, and that's a recent development.

    Glia surround neurons, sending waves of calcium to one another in response to electrical charges in neurons. They're communicating just as neurons do, except neurons talk like land lines, and glia broadcast . . .

    Astrocytes (a kind of glial cell) have crazy interesting jobs . . . showing how an astrocyte caused a blood vessel to dilate.

    Glia have stem cell like properties . . they're both the problem and the answer in spinal cord injury. OPCs are glial cells, the ones that form myelin. The scar that forms after sci forms a non-permissive substrate, and astrocytes are the main component in this scar. The scar's job is to confine the damage to a localized region; this is a good thing.

    If you culture neurons without astrocytes, you don't get functional synapses.

    Four kinds of glial cells: astrocytes we just talked about,

    Next is microglia. Using in vivo imaging, you can watch a microglia send out processes looking for damage like fingers through the tissue . . . your own brain is doing this right now; they're cleaning up after injury -

    Microglia is also involved in chronic pain after injury. They release substances that are useful and necessary in the healing process, but that excite neurons; using morphine against them causes them to release more substances, which excites more neurons, which is how people get addicted -- marijuana, however, acts on glia, which is one of the reasons it works and is not addictive. (I think he just said pot works because it doesn't cause glia to release the substances that excite neurons. Interesting.)

    Talking now about myelinating glia, Schwann cells, oligodendrocytes. After a sci, we have a situation where nature has "booby-trapped" the myelin to prevent regeneration. Myelin keeps growing until early adulthood . . . myelin accelerates connections between neurons; it seems to have to do with learning. Human brain imaging has shown that piano-playing (among many other things) causes white matter tracts to change. So does juggling. And learning languages.

    So we must find out how myelin is formed, and how to stimulate its growth.

    They cultured mouse neurons and stimulated the glia around them with electricity. The question was, could you stimulate the formation of myelin in this way? They've found 4 different ways that they can get oligodendrocytes to make myelin in response to electricity.

    There's a paper just published in Science this summer about all this work, which he refers us to because he's going to run out of time.

    Conclusion: Glia are both the problem and the answer. Understanding the biology behind this is the key to treatments.

  7. #7
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    bellevue, wa, usa

    Richard Garr, CEO & Director, Neuralstem, Inc.

    Donna is introducing him.

    I promise you this will be much less a scientific presentation. I'm going to talk with about the process of clinical trials. I'm going to . . .

    (They're messing with the connector so his laptop hooks to the screen)

    Precursor neuronal cells are where we focus. We don't try to push our cells to turn into either glia or neurons; we grow them in a regionally specific way . . .they're fetal derived, at 8 wk gestational stage. A single donated tissue from 2002 was used to create enough cells to treat every patient we'll ever want to treat.

    We've transplanted 12 patients with ALS, a neuronal disease that kills people between 3 and 5 yrs after diagnosis. There's nothing that slows down the generative process. We put our cells into the gray matter. We're going for both repair and replacement.

    In sci it's a little different. The fda looks at acute and chronic sci as two different conditions, and the requirements for trials are different.

    They have an underlying assumption that the higher up you go, the more danger for the patient. The fda only lets them put in 1/4 of the cells they want to put in, and not necessarily in the place where it would be optimal. Showing a slide of the actual surgery . . . yes, it's very invasive. Geez. He says it's important to know that -- this is not a pill, this is the operating table and somebody's back is opened up.

    You can go to the website (linked above) if you want to read the papers they've published on these methods.

    What appears to happen is that the cells they put in nurture or partly rescue some of the dying cells. Their als patients have seen impressive slowing of the progress of their illness.

    In sci, it appears that if you get cells in early enough, you can get prevent the waves of 2ndary damage. In chronics, you need to bridge gaps . . . what we know about long term problems come from what we're learning from pretty short term studies. The fda told us that they would want to see mri's every 3 months -- but a lot of patients have hardware, and that makes an mri impossible. So we're looking at removing hardware.

    So. They've made a device (a floating canula) that they're testing on pigs right now. They're trying to find the maximum # of cells they can put in.

    The fda lets them do 1 patient per month, then wait 6 months. Then
    They asked for permission to treat chronic scis last december in the usa, and the fda is asking for proof of long term safety before they'll say yes. Will the als patients' safety be enough evidence? It's going on 20 months . . .

    He expects that there will be a conversation, each side of which takes 30 days, which means it's a long process. The design of the sci trial has four centers involved, asia a patients, 16 patients, the first 8 only lower back, then a hard stop wait of six months, then 8 more upper back. These are safety trials, testing both the device and the cells.

    In als, they've been of course looking at things beyond safety, like functional recovery. We want some signposts that even in the lower doses that the fda requires, something is happening. . . and we are seeing that. We do expect that acute sci will behave sort of like als, but it's less clear how this will play out with chronics. We did include FES and activity-based therapy as part of the protocol in our filing for chronics, because we're aware that retraining will be essential.

    The fda is very concerned about rejection, too. We have no evidence that the immune system is bothered by them, but we've had to use immunosuppression anyway -- for life -- on the als patients. For sci, our protocol is only for 3 months of immunosuppression.

    We're looking at big sci trial in India in 5 centers, and we expect that the Indian gov't will not let us go ahead until the USA has permitted it. Their regulatory pathway is somewhat different . . . and their transportation issues make it impossible to even think about doing acutes or even subacutes, b/c you couldn't get them to the centers efficiently.

    We're also looking at stroke patients in China, but again we'll be needing to complete some things in the USA first.

    The fda requires them to keep doing trials on pigs even as they're going forward with human trials -- testing higher doses and upper back instead of lower back, etc.

    They'll be going back to the fda with their high quality als safety proof, asking permission to proceed with sci patients.


  8. #8
    Senior Member
    Join Date
    Aug 2001
    Montreal, Canada
    Hi Kate, I am there too, where are you in the room?
    Pharmacist, C4-5 injury but functional C6 (no triceps/flexors)

  9. #9
    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!


    Jonathan Slotkin, MD
    Invivo Therapeutics

  10. #10
    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.

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