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Thread: Live from W2W 08!

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

    Live from W2W 08!

    Hi, everybody ~ I'm cross-posting this at; hopefully it will reach the maximum # of people someway or another.

    n the ballroom, and believe me it was an effort to get everybody to stop schmoozing and roll down here for opening remarks. The speaker is a woman named Phyllis Gray from Kennedy Kreiger . . she’s saying

    “Most of the important things have been accomplished by people who kept on trying when there was no hope at all.”

    Marilyn Smith, (class act extraordinaire!) gets up and starts off with the housekeeping rules . . . cell phones, where to register, what’s in your bag, where to go for the breakout sessions. The plan this year is to have each of the speakers do their thing twice, but even so we’ve had to choose four sessions from a possible seven.

    Credit to the sponsors of w2w, who make this possible — Kennedy Kreiger, Sci-Step, NWI Spinal Cord Injury Group, Novartis, Acorda, National Rehab Hospital, Sam Schmidt Foundation, Alseres Pharmaceutical, Pride Mobility Products Corporation, Center for Spinal Cord Injury Recovery, Integra Foundation, Restorative Therapies, Medtronic, Project Walk, Bioness, Craig Hospital, Push to Walk, Boston Medical Center, Next Steps Chicago, Determined2Heal . . . I mention all of them by name because

    Marilyn is talking about the first rally 4 years ago, which began with a tape of Bob Marley singing “Get Up, Stand Up, Stand Up for Your Rights!” She says that she looked at her new friend Sue Maus, who was in tears. Sue asked her to wipe her face. Marilyn says she’s working for the day when Sue can wipe her own eyes.

    She introduces Sean Tipton, former president of CAMR. He’s got a slide show and the title slide is up:

    Successful Advocacy

    He starts with the Why and How . . . the first amendment says we as citizens get to come to Washington and bitch! This begins with registering to vote, then actually doing it. Slide is an image of guy in a chair entering a polling place. The politicians are not going to do stuff for us just because it’s right. They should, but they won’t. Next is — $$$$. Shouldn’t matter, but really, really does. He says he knows that for lots of us it’s distateful, but it’s also important to understand that it matters.

    What else? Show up. There are town hall meetings, there is the postal service, there are telephones, and of course there is email. We should definitely be getting the personal emails from the congressional staff we speak with this week.

    What happens when you visit Capitol Hill? He recommends keeping track of the “4 R’s”:

    Relax. (And don’t be taken aback by the fact that some aides seem to be about 12 years old. They’re probably the smartest, hardest-working young people you’re going to run across.)

    Respect. (These people are certainly doing you a favor by giving you some of their time. Don’t waste it.)

    Remember: (Their names, the vibe you get from them–write things down.)

    Relationships: (DC runs on relationships. Build them. Keep those email addresses and use them to say thanks for their time. Don’t assume that the person you’re talking with can’t really help you. They probably can.)

    During your visit, use your personal stories. The fact that you’re in a chair is going to make a big impression. Members of congress might see only 2 people in chairs all year long. They’re going to want to talk to you. Facts are important, but –amazingly–anecdotes matter more. You can make a difference by telling your story. Help the staffer out . . . their job is going to be to write up a summary of your meeting. Make it clear who you are and what you want. They EXPECT you to make a specific request, so do it.

    Be prepared to ask for exactly what you want. (Later this weekend we’re going to get the specific legislative agenda this conference is supporting.)

    New topic: Working with the media: subtitle Congressmen Love Cameras

    The press can move congressmembers sometimes more effectively than the usual tactics. So, how do you get the attention of the press? Personal interest is hard to make into news. (My story is sad = so what.) But things can be news, like us coming here. Relationships matter, facts matter — you can lie to a member of the press exactly one time. Don’t do it.

    Where to start? You can initiate: issue a press release, write a letter to the editor, especially a positive one if your member of congress has done what you asked. This is a very big deal to members of congress, and they will not forget you if you manage to get it into the paper. Follow up on your press release. Call and email reporters.

    If you get an interview with a reporter, you get 3 –maybe 4–points to make. The way to make this happen is draw yourself a box. It has 4 sides, and on each side is one of your points. No matter what they ask you, go to one of your 4 answers. You might get 15 seconds, which is why you have to be ready with quick, succinct, non-jargony things to say. If you’re doing a phone interview, imagine yourself standing up. This is formal, not casual. Be careful and precise with what you say.

    Ends with a Frederick Douglass quote: Those who profess to favor feedom, and yet depracate agitation are men who want crops without plowing up the ground. 202 863-2494

    Great job, serious guy with a ton of experience in this town. Off to the breakouts!

    Gahh, my laptop just had a meltdown, so I've been frantically trying to fix it and simultaneously take notes.

    Wise has been doing the quick rundown about what an injury to the cord means, physiologically. If I had to miss something, I guess this part would have been my first choice . . . it's the standard information. He's explaining how it is that things pass through damaged cords. . . talking about reflexes . . . he says that Chris Reeve's reflexes were so strong that if you gave him a hug, his spacticity would toss his 250# body right out of the chair.

    He says that people should stop thinking about axons as if they were wires . . . they're not. They're living body parts, like arms. And when we talk about regenerating them, we're talking about re-growing body parts.

    It takes a long time to grow an axon--as long as a year for a quad to get an axon all the way down the cord.

    Spasms are the result of messages from above that get mixed up trying to get through the dead part of the spine. Neuropathic pain is the result of messages from below that get mixed up trying to get through the dead part.

    Putting in stem cells and expecting people to walk is never going to work, because 3 things are necessary for regeneration.

    The first one is to replace the damaged injury site with something that is hospitable to axonal growth, but not so hospitable that the axons enjoy the environment so much that they just stay there. What we need is something just friendly enough to be a bridge. Hello, nice to see you, move along.

    The second one is to have something that is a sustained source of growth factors that will stimulate the system to grow and keep growing.

    The third one is to find a way to deal with the things natural to the cord that inhibit growth--the blockers.

    In order to get regeneration, we need all 3: a bridge, a source of growth factors, and blockers.

    The process of figuring out how to make this work in humans is about combination therapies.

    Wise says that after the 2004 elections he looked at the situation in the USA and realized that there was no hope for any federal funding. At about this time he met Suzanne Poon, a Chinese woman whose son has an SCI. Earlier he had met the parents of the Chinese girl who broke her neck at the NY Olympics in 1998, who came to his lab and asked about therapies. His first trip to China was in 1999, where he was invited to talk about methylprednisolone, the steroid that has helped so many injured people. In this way he met virtually every doctor working on sci in the country.

    He and Suzanne decided to do the clinical trials in China. He got all the doctors together at Hong Kong University, with the blessings (but not the funding) of the Chinese government. Wise had made the case to them that curing sci was better than going to the moon. . . they were hoping it would happen before the Olympics this year. (So was I.)

    There are more than a million people living with sci in China.

    Dr. Young's group is on track with the clinical trials, which are unbelievably complicated to run.

    Okay, lithium. Some Chinese doctors published a paper saying that lithium promotes regeneration. Here are 3 recent findings that, says Wise, really opened his eyes.

    1. Lithium attacks a critical enzyme GSK3beta, which turns on growth programs in cells. There are 2 nuclear factors . . . he had his undergrads sprinkle lithium on stem cell cultures, which caused them to grow 3 or 4 times faster than controls.

    2. He found out that vets knew that if they gave lithium to dogs, it would improve their white blood cell count.

    3. People with manic depression who have been taking lithium for years have lots more neurons than the rest of us. Lithium grows neurons!

    4. In 2005, a study was done with 44 patients who had ALS. A control group (half of them) got a drug that improves survival by 33 months. In August of 2007, a quarter of the control group patients had died, and all of them had lost a lot of function. NONE of the lithium group had died, and they hadn't lost function either.

    Lithium makes neurons grow! So, in China this is the plan.

    Test lithium alone for safety and feasibility. (In progress. A lot of the patients dropped out, but there have been no problems -- especially no increased pain, which was the big worry.)

    Test umbilical cord blood cells alone. (Has been given to many thousands of people already, with no problems.) There are places in India and China that are doing umbilical cord blood through IV for $30,000 per procedure. Wise says it's a scam.

    Combine the two of them in a randomized trial to find out if the combination is better than either one alone. Design a study to make sure it wasn't the surgery itself that made the difference.

    The thing I hear from Wise (as I have every single time I've ever been lucky enough to hear him speak) is his absolute determination to make the cure a reality.

    Add the antibodies, of which there are 3 great candidates (rhok & rho, chase, IN-1)

    People ask: Wise, should I go to China for clinical trials???

    He says that he used to say, yes. Now his thinking is that --because the pope himself would be thrilled with the treatments they're using in China--there's no reason at all why the USA could not do these trials.

    The problem is money. No CDRPA for all these years. No money from the NIH. No money from the state of New Jersey.

    How much money? The more, the faster. In China they're trying to do the trials with $6 million.

    In the USA, it would cost $20 million for a single clinical trial. This is the entire budget of the CDR foundation. Companies would do this if there were a way to make money, obviously.

    The passage of CDRPA would mean $300 million, which would be a great beginning. Oh, man.

    Guy in a chair asks if it will ever be profitable for companies to do a full-on, back-to-normal cure. Wise says that Acorda is now making a profit, but that it's a very hard sell to convince executives.

    Combination therapies are only approved by the FDA if it can be shown that the combination is better than each of its elements all alone.

    In China they're working on chronics, which most labs will not touch. In Wise's lab they keep 150 rats with sci. He has 4 people whose only job is to squeeze the bladders of these little guys. They don't like catheters!

    He holds workshops to train researchers how to work on sci -- 4 times a year, year after year. This is why there are a couple of thousand people who now understand how to do this kind of research.

    Todd asks for a popcorn test . . . if this were a movie, and I'd just run out for popcorn, and I came back in and said "what did I miss in your life in the past year?" how would you answer?

    Wise says that he's been mostly in China. In addition to everything else, he's been focusing on the question of how to overcome the need for immunosuppression drugs. He spends a huge amount of time trying to find money, not just for his lab but for the industry as a whole.

    Question: Who should we ask for $$$$?

    Google? Gates? Let's have a lot of baskets, says Wise.

    End . . . we love you, Wise.

  2. #2
    Senior Member
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    Jul 2004
    Pickering Ontario Canada
    Thanks Kate.

  3. #3
    Senior Member Schmeky's Avatar
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    Sep 2002
    West Monroe, LA, USA
    Thank you Kate. I truly appreciate your effort.

  4. #4
    Moderator Obieone's Avatar
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    Aug 2001
    One of these years .... I'll be there... I swear .... thankyou Kate

    I have this picture in my mind now of all those rat bladder squeezers .... squirt squirt and squirt ..... poor little fellas but as Adi would say "thanks god for those rats" .... !!

    ~ 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

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

    Breakout 2: Dr. Damien Pearse

    He's from the Miami Project . . . while I have a sec, here's the scene.

    We're moving from classroom to classroom, like in high school--only a lot nicer than any high school I ever went to. Each one has tables and room for about 40 people, and they're set up with screens and microphones. Right now a lot of people are hanging out in the hallway, also just like high school . . . I wonder where the cool kids are?? I go out to get some plain hot water because if I have any more caffeine I'll achieve liftoff.

    At least this room has less aggressive air-conditioning . . . the people up front are talking about how we're going to have a power surge in half an hour or so, which will cause everything to go dark. Oh boy. That happened downstairs during the opening remarks

    Tricia from CDRPF is introducing Dr. Pearse . . .saying that it now seems obvious that all these people (and all of us) really are needed--that there will be no magic bullet cure--, and that Chris Reeve himself knew this.

    Pearse: Going to start with an overview re: UMiami School of medicine, where the Miami Project is located.

    Shows a slide with a drawing of a damaged cord . . . big red X in the middle. Yep. So,how do you form a physical bridge from the healthy to the unhealthy.

    (New information: there's myelin debris . . . I didn't know this.)

    To get axons to grow, we need growth factors. Yep.

    Our neurons lose some of their ability to grow as we age . . . a strategy is to modify them so that they're more like their younger selves.


    1. Protect existing cells

    2. Repair damaged cells

    3. Retrain existing cells

    4. Improve quality of life

    5. Conduct clinical trials to improve function

    6. Educate the next generation of scientists. (Gotta say, I hope this is really not necessary . . .)

    He says that he started out his career trying to manipulate cells to make things like beer and paper; laughter.

    Oh yay! Slide up titled Clinical Trials

    Completed trials: GM-1, GK-11, MP, famprydine

    They're going to work on cyclic amp and schwann, test for safety, move to large animals, start phase I/II to test their Schwann cells and Rolipram

    Interact with others in business to move the whole thing along.

    So what makes a clinical trial successful?

    Must have published pre-clinical evidence that establish efficacy, safety and repeat-ability. Must have well-designed trials using guidelines. Must have standardized data collection and assessment tools. Must have coordinated, focused, collaborative research networks. Yep.

    So, what's the path? Start with a pre-clinical trial, then file a document with the FDA and wait a few months (or years), then do a Phase I with 5-10 people to establish safety, then do a Phase II to establish efficacy, then do a Phase III, then back to the feds, then wait for approval.

    Okay. So they just finished Phase IIa on Cethrin. They put it in gel form on some patients with acute, complete injuries and got no adverse effects. Safety established.

    Now they're working on doing a Phase IIb for people with < 1 week old C5-7 Asia A injuries; the patients will be monitored for 6 months to see if there's a change in ASIA status. Someone asks a question about how they can be sure their drugs are making the change and not natural recovery. One answer is to do a huge number of patients.

    Now he's talking about the drug that Wise was telling us about an hour ago. It's called Riluzole and it's been used for a long time on ALS patients but hasn't been tried on acute SCI.

    Ah, therapeutic hypothermia . . .one of the protective treatments. Admin of whole-body cooling helps with functional recovery as well as reducing tissue growth. It involves reducing the body temp to hypothermic levels. They actually tested this on rats . . . showing cross sections of their cords, which do look like the method has some effect.

    The way they do this on humans is to put a catheter into a vein and cool the body to 33 degrees within 6 hours, then very slowly bring it back to normal. Guy asks: Is the patient shivering? Is he just, like, cold for a few days? Not as cold as if we put in a "cooling jacket". Hmmmm. I'm guessing that means the patient is kind of miserable.

    They haven't done a controlled clinical trial with this yet, but it's planned.

    On to Schwann Cells!

    You get them from the peripheral nerves in your arms and legs . . . which means they intrinsically know at least something about growing. They're talented little buggers . . .They produce growth factors, they mylenate axons, they restore conductivity, they can easily be taken from your own body, they can be genetically engineerred, and they can be transplanted right back into you, and your immune system will be happy.

    Showing a slide with images from a 2002 issue of the journal Neuroscience. Yes, we know they're protective.

    Another set of images, this time from a 2007 issue of Cell Transplantation. It shows a lot more neurons in the Schwann cell treated cords.

    Another set of images, but hey--this one is rat axons growing in a chronic (thoracic contusion type injuries)--these are also from the Cell Transplantation.

    The images are interesting . . . they show the Schwann cells in green with the myelin covers in red.

    So, what's the function story? The image is a graph measuring walking scores in the 8 weeks post implantation. They get to a score of 13, which is a few points higher than the untreated rats did. Normal is 21.

    Also there was a test in which they didn't treat any rats until they were 8 weeks post and then measured them at 16 . . . the rats did get function back when they were treated later.

    The tested grip strength and self-supported hanging strength . . . both times the Schwann cells improved function by a factor of about 3 (my guess from looking at the charts), but only to about half of the uninjured rats' strength. In other words, the uninjured rats were 12 times as strong as the untreated injured ones, but only twice as strong as the treated ones. Whew.

    So, did the Schwann cells cause pain? This is a huge fear for researchers. The answer is that there was no change -- not better, but not worse.

    The Human Phase I Trial--They're preparing the documents to send to the gov't to do a study on 10 patients, 5 acute ASIA A < 2 weeks, 5 chronic< 5 years , all thoracic). The Ryder Trauma Center will provide the acute group. The chronics will be between T3 and T11, and they can be ASIA B. There will be a 1-year follow-up. They'll get peripheral nerves taken, then Schwann cells will be surgically put into their cords.

    Oy, we're wanting to know timeframes, but he says he'll get to that later . . . I think maybe a couple of years is likely before they can get started. Also, if anybody runs a trial with poor outcomes in that time, the FDA will be more hesitant to approve.

    Talking about using cyclic Amp in combination with Schwann cells and Rolipram. They've done this with subacute rats very successfully, improving walking function to 70% of normal. Yay!

    They're now planning a Rolipram trial, which will involve giving it by IV to patients within 6 hrs of injury. If it's safe, they'll move on to Phase II.

    The timeline is up on the screen. The rodent experiments will cease in 2009. They've been putting Schwann cells plus Rolipram into primates with cervical injuries. The human trials --depending on the FDA and many other factors-- will be underway in 2010.

    Slide up with an image of all the people from MP. Dr. Pearse says that his personal focus has been on working with chronics . . . not a popular specialty, and we thank him.

    Question: Do any of you focus on things like recovery of b/b or anything that's not locomotor?

    Answer: It's much harder, but we do have a study coming out soon that will show improvement in bladder after cell transplantation.

    Question: (missed it) Something about the super cold therapy and how the patients are dealt with . . . sorry, I didn't hear it.

    Tricia closes the session. Really good stuff here, people. It may be that the old Miami Project folks come through at last. They're certainly thorough!

    So, it's time for a break, then lunch with some speakers. I'll be back to fill you in on all that.

  6. #6
    Banned adi chicago's Avatar
    Join Date
    Jun 2006
    near dracula castle
    Quote Originally Posted by Obieone
    One of these years .... I'll be there... I swear .... thankyou Kate

    I have this picture in my mind now of all those rat bladder squeezers .... squirt squirt and squirt ..... poor little fellas but as Adi would say "thanks god for those rats" .... !!

    thank you for your effort kate.
    lol obieone ...poor animals have to suffer to help humans to reverse paralysis.
    ps.i love animals ,but if they can help .....the science like i did [oeg procedure]....agrrrrrr....only increased pain after the procedure.we need more human trials [safe ones and no increased neuro pain after the procedure].
    god help us.[money ,trials and research].
    my best regards to all the scientists who are working hard to cure paralysis.
    • Dum spiro, spero.
      • Translation: "As long as I breathe, I hope."

  7. #7
    Hi Kate-
    Thanx so much for your "blow by blow" this year and last!
    I have a quick question:
    Did Miami Project say whether they have any results from their trials with primates/Schwan cells

  8. #8
    Banned adi chicago's Avatar
    Join Date
    Jun 2006
    near dracula castle
    Quote Originally Posted by mimij5
    Hi Kate-
    Thanx so much for your "blow by blow" this year and last!
    I have a quick question:
    Did Miami Project say whether they have any results from their trials with primates/Schwan cells
    Good question mimin ...primates are our close relatives,but they still cannot communicate [talk]regarding good or bad side effects,improvment [after the procedure] reverse paralysis we need human trials .
    • Dum spiro, spero.
      • Translation: "As long as I breathe, I hope."

  9. #9
    Thank you very much Kate !!!

    Absolutely fantastic summaries!
    ...You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you...

  10. #10
    Senior Member watchthisbaby's Avatar
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    Jan 2008
    Somewhere, Washington
    thank you
    "We're one but we're not the same. We get to carry each other" U2

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