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Thread: Live from Working 2 Walk 2010!

  1. #11
    Thanks Kate! Wish I was there!
    “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. #12
    Quote Originally Posted by wildwilly View Post
    Thanks Kate! Wish I was there!
    Ditto! - please keep us posted!
    "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.

  3. #13
    Senior Member kate's Avatar
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    8:45 am- let's go!

    Sitting in the hotel ballroom where the tables are filling up as people wheel in and take places. Marilyn (the Great) is behind the podium asking for stragglers to come in.

    She speaks:
    we're gonna get started because we've got a busy schedule ahead and we'd like to stay on it if we can

    turn your cell phones off, eh?

    one schedule change -- sabrina cohen wasn't able to make the trip, so we'll shift to cover that

    there's a raffle, got some good prizes, buy a ticket, winner announced tomorrow at lunch

    some very extraordinary people make this event happen -- starting with sponsors, who give us the money to make this affordable and accessible to anybody who wants to be here. it's our sponsors who make that possible. Check out their products and services at the booths outside

    our speakers are a very distinguished group -- on the cutting edge of both the research and the recovery community.

    we're introducing an advocacy session this year, and some stars from that realm have given up some time to be here.

    we always hear from scientists how much it helps them to interact with people in chairs -- take time to talk with them; it's why they came here.

    we also have extraordinary gang of volunteers, who started about 6 months ago making this work . . . thousands of emails, phone calls, work, work work. also have volunteers who flew out here to do the on the ground work that has to be done.

    and last but not least, the international guests -- 5 people from the norwegian spinal cord injury association are here (applause as they give a norwegian wave) -- barbara is here from france -- carles from spain -- martin from ireland. Both barbara and martin are on the 2nd trip to w2w.

    remembering that today is veteran's day. sci and tbi are common battlefield wounds -- saying thanks to them

    pause for introductions at the tables to people we haven't met

    gosh, i'm glad to be here.

  4. #14
    Senior Member kate's Avatar
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    almost time for wise!

    marilyn is introducing the incredible suzanne poon. (who if you haven't met her looks like a teenaged movie star, but is actually the very activist mom of a son with sci)

    so, here we all are. you're the people who don't accept that you have to be paralyzed for the rest of your lives. 5 years ago the scientists who came to our first rally looked the attendees in the eye and said, we really don't have much for you

    depressing but motivating . . .

    this year we're going to hear about human clinical trials -- a big step, but just a step in what is going to be a marathon.

    we can't rely on the corporate world, or the gov't, or anybody but ourselves. it's a tough go, because of what sci is -- an everyday struggle. once you get your head around it, lots of people just don't feel the urge to go out and take on another struggle, which is what fighting for a cure really is.

    after people have made the giant jump to independence & work, many of them turn away from paying attention to science or trying to raise awareness

    it's understandable, and yet . . . there are those who can't make that giant jump, and some who can't get past the despair.

    coupla weeks ago i had dinner with a young man who was injured in august; i asked him if he'd like to come to phoenix, and he said, nah, there's really nothing there for me

    this attitude is normal . . . call me when the cure comes.

    i also met a woman who'd just had 2 successful treatments for breast cancer. she knew she was lucky, and she remembered the trauma of the diagnosis and the chemo. this woman decided to be an advocate even though she personally was ok.

    think about the breast cancer funding. i urge you to think about sabrina cohen, who wanted to be here but couldn't because she couldn't find anybody to travel with her. work for the people who can't leave their homes, or can't use their hands, or who are stuck in nursing homes with no place else to go. speak out for the people who could not endure life with sci and took their own lives.

    speak out because it enriches your soul

    she's introducing susan maus

    my dear friend, whom i first met after some online conversations in 2005 that led to the first rally.

    sue comes from a pretty extraordinary family, who are buzzing around here making everything work, she works full time in IT, and she's u2fp's board of directors.

  5. #15
    Senior Member kate's Avatar
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    Sue Maus

    She's rolling up to the dais.

    you know, marilyn is really the driving force behind u2fp. she does most of the work, along with donna sullivan, who had to step up and take over everything i've been accustomed to do and couldn't this last year because of a long illness.

    i get to introduce all the really cool people!

    starting with wise young, whom lots of you know as the guy who started carecure . . . it's such an important place for so many of us.

    he's the director of the keck center at rutgers university, and he's the guy who went to china and laid the ground for a network of clinical trials.

    (editorial comment -- i first heard wise talking about the need for that network in 2003)


    in a white shirt, trying to get the microphone working -- GIANT feedback ouch! -- thanks to sue and marilyn.

    you are both my heralds. these last weeks have been very emotional for me. starting when one of the rutgers football players got an sci in a football game. our community is in mourning, everybody following his progress, just as families do everywhere.

    i spent the last 10 days in india, where having an sci is frightening. i met a young man who had been in a car crash 2 years ago, where he was dragged out of the car with his head dangling and made to sit in an er for hours with his head unsupported . . . he's the son of one of the richest families in india.

    it's not a matter of money, it's a matter of ignorance.

    i don't know how word gets around, but by the time i left there were people following me around with stacks of mri's . . . please tell me what this means.

    india doctors say the opposite of what usa doctors do. here sci people hear "you'll never walk, get used to it."

    in india they say "walk or die."

    and many incomplete patients from india do walk . . . when they studied incompletes here in the usa in the 90's, they found that 90% of them could recover -- as opposed to 50% when similar studied in the 70's.

    maybe telling incompletes they can't walk is having a NOcebo (opposite of placebo) effect.

  6. #16
    Senior Member kate's Avatar
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    sci 101


    I feel like i'm bringing coals to newcastle, but sometimes people hear litle nuggets that they didn't know before -- so we start at the very beginning.

    The brain connects to the body through the spinal cord
    Nerve cells (neurons) send nerve fibers (axons) down (motor) or up (sensory) the spinal cord.
    Sensory neurons are outside the cord, sending axons into the spinal cord while motoneurons in cord send axons to muscle. Important to realize that axons are NOT wires, they're living things. You need to grow new ones if they're damaged.

    What's the biggest cell in the body? An axon, which goes all the way from the brain to the furthest tip of the body. Repairing it is a tall ask . . .

    Revlexes . . there's a monosymaptic reflex, which is what causes your knee to jump when the doctor whacks it, and what causes spacticity in sci patients

    There's also multi-synaptic reflexes, which are what make babies' feet react.

    Wise is demonstrating what happens when you turn a baby's head, one arm goes out, one arm goes up, like a fencing move called musketeer.

    you need less than 10% of your axons in order to walk . . . that's why walking is one of the low-hanging fruit of research.

    so what happens during injury?
    the part of the axons that are isolated from the neuronal cell bodies dies.

    the neurons above and below the injury survive.

    showing a drawing of axonal injury . . . kinda weird that this extremely teensy little bit of the body has so many parts -- 10 of them are labelled in this drawing.

    what are the consequences of sci? oh, the dreadful list:
    sensory loss
    neuropathic pain

    spasms are different from spasticity -- c. reeve used to suffer from spasms so bad they would throw him out of his chair, and the reason he used to go around with guards was so that no one touch him and trigger a spasm.

    allodynia -- hyperexcitable cord above the injury
    noxious -- (that sound horrible) real pain that may come back if there's a cure
    neurogenic -- like from phantom limbs

    so what's regeneration? how can axons be regenerated in such a way that they make the trip from the injury to the original connecting point. axons grow at the same rate as hair . .

    why don't our axons regenerate? it didn't evolve as a recovery mechanism because it took too long.

    instead, organisms evolved some other strategies: a bony armor called the vertebrae, redundant pathways . . .

  7. #17
    Senior Member kate's Avatar
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    Wise: Clinical Trials

    When I met Suzanne Poon (first I couldn't believe she had an 18 year old son), she asked me if we could do something in China.

    We formed a partnership in 2004 and set up the network in 2006.

    We had to choose a therapy to test . . . we picked umbilical cord blood + lithium. It was the most promising and the safest to do a clinical trial with. I didn't invent it.

    Showing a picture of a rat cord that has had a 10 gm weight dropped onto it from different heights. If the weight is dropped from 12.5 mm, the rats are injured but recover. Twice that height, they don't recover.

    Slide showing a cross section of an injured cord . . . there's a black hole surrounded by axons trying to get in but not growing out.

    So, how would you bridge the injury site? The site is filled with macrophages and astrocytes. If you put cells right into the middle of the injury, they're stuck there. So you put cells on the edges of the site (at 45 degrees) and they migrate in and form a bridge.

    What kind of cells should we use? In 2006, there were only two approved sources (GMP, he means, because it means the cells were sourced using Good Manufacturing Practices). Adult or neonatal GMP cells were either bone marrow or umbilical cord blood. The other options were fetal (from abortions) or ESC, which were not readily available in 2006.

    He likes cord blood cells because they stay where you put them. They also are recognized by the glial cells as part of the central nervous system and that means the glial cells don't attack them.

    What about lithium?

    it's a drug used for manic depression . . . we all have it in our bodies . . . it's very, very cheap. And it inhibits an enzyme AND increases cell growth. Wise had heard that it seemed to repair sci, so he put his cord blood cells into his injured rats, then treated them with injections of lithium . . .

    Showing a list of about a dozen papers published about how umbilical cord blood works in sci.

    Dasari published a paper (which I'll hook you to when I get a minute) that Wise is describing now. Rats were made to not just walk, but to walk on a beam, which is a lot harder. Also -- Wise is so funny -- demonstrates what it looks like to hold a dangling rat treated with lithium & cord blood and stroke its limbs.

    Yick 2004 (another paper I'll find and link to . . )

    Now doing CN 102b in china
    have a usa network, which will test the phase 3 study
    they will also be doing it in india
    showing a picture of a young chinese woman who was the reason for starting clinical trials
    suzanne poon shown surrounded by the rest of the china board

    Time for Ed Wirth, from Geron

  8. #18
    Senior Member kate's Avatar
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    Ed Wirth, Geron

    He's the medical director at Geron, going to talk about preclinical and phase 1 development of clinical trials.


    I'm just getting over a cold, hopefully my voice will hold out. Thanks for the chance to give you an update on the trials . . .

    Starting with a review from what he told us at w2w 3 years ago. How do embryonic stem cells work?

    We funded the development of hesc's labs in the 90's. We paid James Thompson's lab at the university of Wisconsin to figure out how to use discarded embryos to to extract the stem cells . . . every single cell we have came from that very first embryo.

    No embryos have been used since then to create any of our stem cells.

    What do want to make with stem cells? Heart cells, cartilage, neural cells --

    We have a central manufacturing facility at Geron, wemultiply the starting materiial, we differentiation, and we preserve for transplantation.

    Our product is called grnopc1. showing a picure of a little vial; it's just medicine . . . (I'm having a moment here, thinking about how long I've followed the story of this product.)

    It takes 42 days and 4 steps to turn a stem cell into an opc, using a process developed in Hans Keirstead's lab at UC Irvine. Then there's a huge range of tests to make sure purity has been preserved.

    Talking about the nature of the injury and how opc's are not a magic bullet and not meant to be. opc's remyelinate surviving axons, which makes the axons better conductors; they also support regeneration of axons, which they saw in the lab at 9 months after transplantation -- has a slide up showing "a sea" of human matter in the middle of the damaged place in the rat's cord. That could only be there if the opc's had somehow stimulated it, because this was a rat cord.

    this means that the opc's are somehow allowing not just remyelination but regeneration . . . ahhhh, he talks like 3 times normal speed! I'll get him in the panel and in the workshop.

    opc's have not migrated to where they don't belong, and they haven't seen any evidence of any abnormal cells anywhere, for up to 12 months later.

    what about immunosuppression to reject rejection of the cells? it turns out that opcs don't cause much of an immune reaction.

    going over the history of this study, from march of 2008 to today.

    Now have centers open in Chicago, Atlanta and (soon) San Francisco. They're doing patients there, and will be doing follow up at 1 year, and long after that.

    There will be 8-10 subjects, asia a complete, T3-T10, 18-65 years old

    He just said that with some of the new scar tissue treatments coming out, together with our evidence that the cells promote regeneration,

    Showing a picture from the operating room at the Shepherd Center in Atlanta, where the first cells were given to the first patient on October 8 2010, NO HARMFUL SIDE EFFECTS TO DATE.

    The FDA has imposed a 30-day stagger, meaning that they are currently enrolling the second person. Jeez.

  9. #19
    Senior Member kate's Avatar
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    Panel One

    Wise, Ed Wirth, Anthony Caggiano from Acorda, and Leif form the Norwegian SCI group . . . Sue is introducing them.

    Question: Wise, I'm curious about the clinical trials? Are you doing human clinical trials?

    Yes, unfortunately I spent too much time on 101 and didn't get enough to talk about the trials. We're currently on our 5th phase, and we're doing patients with an escalating dosing trial . . . cord blood cells, lithium, methylprednisolone. We had a glitch with GMP standards and had to hire a consultant to come in and examine all our steps. We're expecting word that we're in complete FDA compliance. If it's all good, our first case will be on November 29th and then will do 2 to 4 cases per week. We also have permission to do it in parallel in China.

    We're looking at our Phase II trial in Austin TX next April. Toward the 4th quarter of 2011, we'll try to have trials going simultaneously in China, India, Norway, and the USA.

    Leif: as a user of this research, I have some questions . . . chronic spinal cord injuries??? In Norway we have an infrastructure in place, everybody is ready, but . . . how do we speed up the process of getting a trial going where we are? Also, for Ed Wirth, your cells look to be promising for chronics . . .how good are those neurotrophic factors from opc's compared to the others, assuming that scar tissues could be dealt with?

    Wise: Leif, you're doing the right thing, putting pressure on me and everyone. We started with nothing in China, except the good will of the doctors. I was commenting to some friends recently because even if everything stopped, we'd still have done an incredible thing there. We established standards of care, and we got everybody to buy into the concept of running clinical trials. We have to break through the regulatory barriers, which are worse than in the USA. Here, they have to give you a reason for their decisions within 3 months. In China, it's 3 years. Nobody has ever done clinical trials there, ever. I'm now traveling 350,000 miles every year, going to China twice a month. What I want to do there and everywhere is to find somebody local who can drive the network. In China that's Wendy; you must have someone who can run the network. Leif, you're the Wendy in Norway. I hope that in January we can set some milestones for a trial there. Keep doing what you're doing. Put pressure on us. Come to these meetings. Make us wake up every morning and think, "Norway, Norway!"

    Ed: My clinical team has been doing all the work -- that's me and two people getting all the permissions. We have to rely on outside people to do a lot of the work. Things take a long time because there's so much work to do . . . our working hypothesis is that the scar tissue that forms is the biggest barrier to opc's working on sci. Hans tried to genetically modify the cells to make them do both remyelination and scar destruction, but that didn't work out . . . we all know now that it's going to be a matter of figuring out as fast as possible how to time and combine things.

    Question: Do you monitor physiology of the cells in your trial patients, do you

    Ed: When people have sci surgery, they attach electrodes to the head and the legs and monitor potentials between head and the legs. However, in the cases we're doing, there are no potentials to monitor. There's a paper that shows evoked potentials are not present in many people who have incomplete injuries. With regard to tracking the cells . . .how do you do that? You need some kind of label, or you need to genetically modify them so they express something that can be seen in MRI. We don't have that yet, Changing our product now would mean re-doing all those clinical safety studies.

    Wise, what can you tell us about the EXCell event in Germany?

    Wise: I only know from the internet that a child died from having cells injected. The parents are suing the company. The company was set up to take advantage of a loophole in German laws that allows autologous cells to be injected. There have been no safety studies, and I have been advising patients not to have this done.

    Ed, what's the diff between acute and chronic?

    Ed: Acute means within 24 hrs at the absolute max . . .2 is better. Subacute is the secondary damage period, when scar tissue is forming. In rodents it goes out to a month. GEron did not see benefit in rats more than 2 months out, which is why we didn't think it worthwhile to try our cells in human chronics.

    Wise: Chronic is 1 year of no change. Our patients will be 18 - 65 years old.

    Leif: Asks what is Acorda's plan

    Anthony: We started out with some pretty large scale failures in our attempts to help with sci. We've done well with MS, and it's not appropriate for me to comment about how ampyra works for sci patients. We're still very interested and devote a lot of time and money to sci.

  10. #20
    Senior Member kate's Avatar
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    Rachel on Advocacy

    She works for Ogilvy, and is a former staffer at the Reeve Foundation. She came to us and taught us how to lobby -- she also took on every last task we asked her to during our events in DC.

    She says: I've been with u2fp for the last 4 years, and have seen this group grow from just a few determined women to 4 determined women, then 5 determined women, then -- well you see what's happened if you look around you.

    She invites JenJen and Martin Codyre up on stage, and then asks everyone to write down the reason they're here at w2w . . . Tim says he's excited to learn about the new technologies that are going to help us all. One of the Norwegians says that he's here to learn, and to justify the way they've been asked to spend their organization's money. Woman says knowledge is power . . .I'm here for my son. We have to educate the world about what paralysis truly is. Stephen Davies says he's here to share some new developments about both acute and chronic injuries. Science does work.

    RAchel: So that's a good cross section; for myself, I'm here to cure paralysis. I want to see therapies. I look around this room, and everybody knows that's not going to be easy. I don't often say this, but I suffer from paralysis, too. There's a couple different kinds. Wise told us about one kind in sci 101 . . . but there's also the paralysis of mind. Apathy, fear, laziness, procrastination, whatever. Sometimes we don't do what we would like to do.

    What's the cure for that?

    At u2fp, our mission is to unite all those affected by paralysis, and to empower them to fight. Unite 2 Fight.

    Everybody here has overcome paralysis of mind. What I think the cure for that is lives in one word: Advocacy. Today we are the community of advocates. That's extreme power. We should all be feeling it, and when we leave here we need a plan. It's up to every one of us to figure out how to fight this fight in our own way.

    Pick up your pen again . . . write down I . . . . . am . . . . . curing . . . . paralysis. She takes her mike out into the audience and asks people to speak the words. (They do, repeatedly. It's strangely powerful.) She says, I looked at myself in the mirror today and said those words, and -- wow. I'm doin' somethin' today. We're handing out toolkits now.

    Our goal for each of you is to be able to do one act of advocacy. If you're one of those people who's already doing stuff, then make it your goal to get one person besides yourself to do something.

    What's an advocate? somebody who won't give up, and won't shut up -- somebody who does any small thing that turns what IS into what COULD be.

    We identified 3 kinds of advocates -- Community, Media, and Legislative. It's an act of advocacy to say I was in Phoenix curing paralysis. Who's the model for a community advocate? That would be our badass friend Joe White.

    How about Media? That's somebody who knows how to use media to amplify their own voice -- social media, newspapers, magazines, music, youtube, etc. He can be heard!

    How about Legislative? This is somebody who likes to be the boss . . . the fact is that the people who work in DC are your employees. They respond to your agenda, and if they don't you fire them. As a good manager, you need to set their direction and if they don't follow it, you fire them. You have to tell them what to do, and you have to check back in with them to make sure they're doing what you told them.

    The idea here is that tomorrow, you'll get a chance to pick one of these ways to advocate. I'll show you exactly how it's done. The other two people I have up here are experts in the fundraising side of things -- both in the community and in the corporate world.

    Introduces Martin Codyre, from Ireland. Injured 2 years ago, has spent most of his time since then researching what the future holds. When I heard that paralysis can be cured, I started passing that word to my own community. People do want to help us, but they don't know how.

    I go up and give the First Annual Kick Ass Advocate award to our friend Karen Miner -- who is a truly great example of how to work with what you've got to help cure paralysis. She was injured 28 years ago, (c5) and was a single parent of two little girls. She took it upon herself to start raising money, and some of that money went to Hans Keirstead's lab at UC Irvine. I tell the group that the Geron trials Ed Wirth talked about began in Keirsteads' lab . . . which means that this woman directly helped to make the first ever human embryonic stem cell trials a reality. That's kickass.
    Last edited by t8burst; 06-05-2011 at 12:49 PM. Reason: privacy

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