Working 2 Walk

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Breakout Session 3: Hans Keirstead

Posted by katewillette on April 13, 2008

He says that in his lab they focus on acute, sub-acute, and chronic.  (Hans Keirstead, for those who haven’t met him, is kind of Robert Redford type.  I’m just sayin’.)  He’s describing an animal whose cord had been cut exactly 50%; within days it has lost a lot of tissue because of a “bad guy” molecule.  A single injection — of a restorative molecule –that could be given by any nurse — gets rid of a lot of the secondary degeneration.

There’s a video taken from underneath a glass table top on which a rat is dragging itself along — a single dose of the molecule prevents a LOT of the secondary damage.

The technology to do this is in clinical testing –Medarex began  clinical trials in 2006 for ulcerative colitis . . . the Keirstead approach is to find other (more profitable) diseases that studies can get funded for, then piggyback onto what’s learned and done in the process to bring the therapies to sci.

If Hans can get 1.5 million dollars, Medarex might provide him with $3 million worth of product to run a trial of his own

Subacutes— different beast completely from the acute.  Wow, he puts up a picture of a human egg sitting in a fallopian with a tiny blue speck of sperm heading its way. Wow.

We’re going to talk about how to grow human embryonic stem cell lines just for clinical use. The job is to be able to do that with certainty that they’re pure, and then be able to grow them into whatever you wanted.  Aborted fetuses are not a source for this for ethical, political, and practical reasons.

What if we had limitless sources of something like human heart tissue,not to grow new hearts, but to try out things that might

2 guys and a rat show up at the FDA and say, we’ve made a rat walk again . . . the FDA says, so what.  Do it again, under our regulations.

OEG’s are the cells that make myelin, the conductor that makes transmission of information through the cord possible.

He cooked up a soup to make pure OEG’s . . . it’s cooking time is 42 days.  They did this by simulating the media in which our own brains create these things.  This is the only place in the world where a pure and inexhaustible source of any kind of cell has been developed.

Hans just radiates confidence.

Geron is going to submit their IND to the feds this summer and they plan to go to clinical trial right away.  They went to the FDA and said they’d treated thoracic injuries in rats and the FDA said, well you can’t test humans with cervical injuries until you repeat the work with cervical injuries.  Jeebus.

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Posted in Clinical Trials, embryonic stem cells, paralysis, Regeneration, stem cell research | Tagged: , , , , | Leave a Comment »


Posted by katewillette on April 13, 2008

Iced tea, ice water, some kind of chicken thing with mushroom sauce.  Salad with uber tangy dressing, cheesecake . . .

At 1 pm Sue Maus gets on the stage in her powerchair to say thanks and introduce the advocacy speakers.  The first one is Donna Sullivan, (known to CC users as IMHopeful).  She’s a complete star.  Talking about how Chris Reeve’s appearance on Larry King LIve was her first introduction to sci . . . like so many people, she was shocked at how tough and complicated this monster is.  Talking about her son’s injury nearly 3 years ago.  They flew on a small jet with 3 EMT’s to a critical care facility at Ohio state, his head on her lap the whole way.  Tells about the moment that he –hooked up to all the tubes –asked for a computer.  Why?

He wanted to pay his bills.  Happy moment!

Donna programmed the phone numbers of her legislators into her cell phone and called them regularly until they came along and agreed to co-sponsor CDRPA — a process that took many months.  I say again, she’s a rock star.

Next is me.  I’m nervous as hell, but I manage to tell a story that illustrates something I firmly believe: that we all know how to advocate because we had to do so much of it in the hospital.

Then comes a man named David Zacks whose family sat at my table–pretty wife, 7 and 5-year-old daughters, and 3 year old son.  The 2nd grader gets up on the stage with her dad to turn the pages of his talk for him.  He says that like all of us, he was told that this injury is permanent and there is no reason to do anything but get used to the situation and make the most of what you have.  (Inside, I’m hearing the room go hisssssss, but we’re quiet and respectful.)  The little girl makes a face when her dad tells how her sister sometimes introduces him by saying, “This is my dad!  He pees in a bag!”  David’s wife is next to me videotaping this.  His parents are across the table holding the younger children.  David says that for him the cure means being able to hold a beer in his hand . .  . being able to hold his child’s foot tight with one hand while he tickles him with the other.  Ah, there is loss everywhere, everywhere in this room.

The last speaker is Joseph Briseno, a man who was here two years ago, the father of an injured soldier–in fact, the father of the Iraq war vet who has survived the worst set of injuries of any soldier living.  He has a beautiful, warm voice, a Spanish accent, and so much quiet passion.  His son is blind, on a vent, fed with a stomach tube, has a C3 injury and a TBI.  Jesus, God.  The family has been taking care of him themselves for 5 years.  Photos of his family are up on the screen; beautiful daughters with big smiles and the son who is so clearly loved. He makes me ashamed to have ever complained about anything in my life.

He ends by saying that yesterday is a mystery, tomorrow is a mystery, today is a gift.

We’re silent, and then we clap.

Next up is — from Alseres Pharmaceuticals, Dr Mark Hurtt, the Chief Medical Officer to talk about Cethrin

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Breakout 2: Dr. Damien Pearse

Posted by katewillette on April 13, 2008

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

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Breakout 1: Wise Young

Posted by katewillette on April 13, 2008

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.

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Posted in Christopher Reeve, Combination therapies, Regeneration, spasticity, Wise Young | Tagged: , , , | Leave a Comment »

Opening session

Posted by katewillette on April 13, 2008

In 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 distasteful, 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.)

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Posted in Advocacy, Media | Tagged: | 2 Comments »

Morning Gathering

Posted by katewillette on April 13, 2008

Argghh, my body still thinks it’s in Seattle, so be kind if I sound groggy.  It’s just after 8 am here, and the hordes are starting to gather around a table full of bagels and fruit.  Across from me is an impressive array of displays from some of our sponsors, and old friends keep popping by for a hug –Dan from North Carolina, Todd, Dr. Young, Dr. Davies, Sue Maus’s charming family from Minnesota, all of whom sound just like my relatives.  It’s a lively group for what feels to me like the dead of night.  In a few minute they’ll be gathering us into the ballroom for opening ceremonies . . . we wish you were here.

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Saturday Night in DC

Posted by katewillette on April 13, 2008

Hi, everybody!

I’m writing this from the ballroom at the Kellogg Conference Center in Gallaudet University.  There are maybe 50 people in the room, munching on pizza and nuts and drinking god stuff from the bar in the corner.

Marilyn and I are discussing how tough it is to do yoga; Dr. Davies and Dr. Archibald are across the room talking about what they’re going to present tomorrow.  The executive director of the NJ Commission on Spinal Cord Research is at my side watching me type.  Leo’s at the next table making people laugh.

This is a test to see how well this blog is going to work.  Talk with y’all tomorrow ~

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Welcome to the Working 2 Walk 2008 Live Blog

Posted by unite2fightparalysis on April 3, 2008

Our thanks to Kate Willette (and hopefully some others) who will be reporting live from Working 2 Walk 2008, April 13-15 in Washington, DC.

Posted in paralysis, spinal cord injury, stem cell research | 1 Comment »