So, I was a slacker about making appointments to see my Senators, but I go anyway. There’s a directory of senators hanging on the wall of the building where we had the briefing, and it says that Cantwell is in the Hart building.  The security guard tells me it’s four blocks up the street, so I head up there.  Past the Library of Congress, (which I feel tugging at me but resist).  Past the Supreme Court, where I send warm thoughts toward all the liberals and pray for their continuing health . . . there are about 200 people standing in line; the doors must be about to open for the day.  No protestors of any kind out front.  Keep going, thread my way through a tour group of British teenagers who are joking about their hotel in charming accents.  Catch up with Sue Maus’s mom and aunt—her aunt is my new favorite person.

She’s a Minnesotan to the core, full of sardonic remarks but with a huge warm heart about half an inch below the surface.  She’s a good-sized woman with a mess of red curls, wearing a purple windbreaker – the polar opposite of a trim haircut in a dark suit. ☺  So, I give them a hello and hurry on past to get to the Hart building–only to find that Cantwell has moved to the Dirksen since they made that directory . . . this is one of those things that would be so annoying if Bruce were with me—just getting to these places can be such a challenge.  So, I go over to the Dirksen, which is kind of next door, and find her office.

This is how it goes: I ask the kid behind the desk if I can just leave a message for the senator  . . . when I’ve told him what it is, he volunteers to try to find me someone to talk with.  Great!  So I wait a few minutes and then a person who seems to be about 22 comes in.  He knows all about CDRPA, and he says it’s one of the things the senator wants to take some time to think about . . . okay, what’s her concern?  He says that she doesn’t like the idea of giving instructions to the NIH about how to use their time or money.  I say that I’m not the person who could best answer that concern, but that I’ll make sure someone who is either briefs me or calls him directly.  The next –most important—thing is to get his card and enter his number into my cell phone.  This way I can reach out and touch him whenever I feel the urge, you know? I learned this from Donna Sullivan, who leaned on her own representatives so persistently that they gave.  If any of you are from WA state, here’s the name: Mark Iozzi.  His number is 202 224-3441.  His email is mark_iozzi@cantwell.senate.gov  Oh, and the kid behind the desk is named Dave; he graduated last year from the same college where our firstborn is a sophomore, Western Washington University.  If you call the main number for Cantwell’s office, he’ll probably answer.  Be nice to him, he’s a sweetie.

Here’s what it’s like . . . you reserve a room in one of the office buildings near the capitol.  You make sure there’s coffee and tea plus the usual tray of cut-up fruit – maybe some muffins or sliced bagels.  Neat rows of bottled water and juice.

Your presenters show up with their laptops, wearing dark suits and ties, carrying their notes in their pockets.  (Dark suits and ties– or heels, for those of us who are not male –are required attire here.  It’s very obvious who the regulars are in any room.)  You hope for some congressional aides and maybe even the press.  We have 6 scientists here this morning, plus several people in chairs and more than a dozen activists.

We start on time, more or less, although there are almost no guests from the congress or the media.  Possibly the problem is that this is the day the pope is in town . . . possibly we’re too early in the day . . . possibly –as usual—there are too many other priorities.

Wise Young gets up to introduce the session and name the speakers . . . he’s talking as if there were a crowd of aides here.  First to speak is Dr. Pearse from the Miami Project; he explains what MP is – an organization devoted to curing spinal cord injury.  He’s just said this is a very good time to be working in this field because there are so many extremely promising therapies.  The issue, he says, is that we need funding to bring the research forward . . . many young scientists are considering leaving not just sci research but science itself because they can’t do their work.

Stephen Davies gets up to tell us about two new and exciting therapies.  He’s showing his slide that has the axons straggling toward the injury site and being stopped by a scar.  His strategy is twofold – to get rid of the scar and to encourage the axons to grow past it.  His lab has discovered that there’s a substance called Decorin that breaks down the scar tissue in an injured cord.  What about the business of getting axons to grow?  An NIH-funded group from the University of Rochester isolated a type of cell called a glial-restricted precursor that can be coaxed into forming another cell called an astrocyte.  The combination of astrocytes and Decorin is an extremely promising therapy, and Dr. Davies wants very much to bring it clinical trials, hopefully (since he’s an academic and not a businessman) through the NIH.

Less than 10% of SCI grant requests are being funded.  The breakthrough that Dr. Davies achieved with his astrocyte cells was originally funded by the NIH . . . but it’s likely that under current conditions his application would not have been funded.  We must assume that there are plenty of grant applications currently sitting in drawers, unfunded.  This is science that could be done but isn’t.

Dr. Simon Archibald gets up to say that we’re NOT looking now for the way to restore function through therapies, because we have therapies that have been shown to work –but instead how to choose the best combination of those therapies.  We’re at a critical point, where the process of getting from labs to patients is finally underway.  It must be funded.

Dr. Mark Hurtt, (who is a businessman) wishes us a good morning and addresses the clinical trials and the fragmented research infrastructure.  “My job is to find technologies, pull them out of the labs, do the work to meet regulatory requirements, and then get them to the patients.”  His company’s product is called Cethrin . . . it’s the drug that’s furthest along in terms of getting it to patients.  This was given in a Phase I trial to patients with complete spinal cord injuries, and the results were very encouraging.  Two of their patients went all the way from ASIA A to ASIA D.  The company is called Alseres, and it’s based in Boston; they have a whole suite of pre-clinical projects.  Dr. Hurtt is the one who chose to work with Cethrin.  There is no turnkey research structure they can turn to, as there would be in cardiovascular research, or almost any other kind.  (More on this later.)

Mark says: “I need one clinical trial network.  I need one budget with that network.  I need one institutional review that measures the efficacy of my trials.

“We own Cethrin.  We have a Phase IIB trial starting in 2008, and we’ll be doing a Phase III trial.”  (I get excited all over again listening to him; this drug works.)

Wise gets up again and makes concluding remarks . . . The CDRPA is made to provide the infrastructure – it takes years to build and small biotech companies don’t have the means to do it.  He brings Melissa Pitts up to talk. She’s a PT with twin 7-year-old sons, one of whom is paralyzed due to a C6-C7 injury sustained during birth.  She thought she understood what it meant to live with a disability; she’d been working disabled patients for years.  She learned.  She learned both patience and hope.  There are treatments within our reach; she’s been following the progress carefully, as a scientist and as a mother, for all these years.  Here’s what she’s learned:  the scientists are just like her old PT patients in the sense that they are often stopped dead in their tracks because of money.  Your insurance has run out, your funding has run out, you’re done.

She says, through tears:  I believe I will see my sons walk together.

Wise gets up to take questions.  Tricia asks why doubling the NIH funding is not enough.  He replies that in 1995, sci research had $48 million, and it now receives $68 million.  This is not doubling. Only 10% of grant applications are funded. Also because the population is small, funding from companies is small.  And, there is the huge barrier of no infrastructure.  If you get cancer, you go to a cancer institute and you’re immediately randomized to take part in experimental therapies that quickly enroll you.  The work of research proceeds more or less smoothly and automatically, because the systems are in place to allow that to happen.

Another issue: less than 5% of people who got investor-initiated NIH grants were under the age of 42; this means that experienced scientists are spending more and more time writing grants and less and less time doing research.  And younger scientists are saying the hell with it.

Todd Adams (wearing a dark suit, naturally) staffs representative Jim Langevin’s caucus on health and disabilities.  He introduces himself and talks about the CDRPA and the importance of getting it into general awareness.  He asks a question about Wise’s 10% figure, and Wise says it’s even worse than that . . . scientists who do make it through the grant process get halfway into projects and then have to stop and re-apply, and often lose funding just as they’re getting somewhere.

Wise asks Todd to address the chances of the CDRPA this year.  Todd says it’s a very tough budget year, and that in the area of increased NIH research, we need to press.  As far as the CDRPA, he thinks there’s little understanding of the need for this bill.  Members don’t get why this is important.  Many things are up in the air when it comes to funding . . . he personally wrote letters, but there was no response at all until ACTIVISTS called, wrote, and faxed their representatives.  He’s encouraging us to nag, nag, nag.  Staffers are used to this; they expect it.  It doesn’t trouble them.

A woman asks for a legislative summary . . . Marilyn says there’s a packet prepared.  The woman wants to know if there’s a time frame.  Todd says it’s urgent and ongoing.

A woman asks a question about young scientists.  Dr. Davies gets up to say that in his lab there are many graduate students who see what hurdles he has to jump through to get funding and they –understandably—say never mind.  Dr. Pearse repeats the message that at the Miami Project many scientists have given up and left the field for the same reason.  General discussion that there are labs across the USA that are in crisis because there is no money to fund the work.  The last 8 years have been terrible for scientists.  Wise is saying that he could not have imagined that 9-11 could have had such a catastrophic effect on the field.  In his lab, too, young scientists are looking at the big picture and shaking their heads.  (This is criminal when there are therapies that work.  Makes my head explode.)

Wise says that it’s unusual for scientists to show up at an activist event like this one; they’re here because they care desperately, and because they want to do their work.

Question: What exactly do you mean by the term “infrastructure”?
Dr. Hurtt:  What we mean is not bricks and mortar, but rather management.  When we need to launch a trial in sci, we start by locating qualified investigators.  What makes them qualified is not their ability to do the science, but their capacity to manage information and regulatory affairs.  There are rules by which they must play, and not all of them know those rules.  They need a research coordinator.  These people are like hen’s teeth.  It doesn’t matter if you have 5000 neurosurgeons . . . you need a huge rolodex to discover who the neurosurgeons are that have research coordinator.  It takes us a year to find the 100 out of 5000 who know how to do this.

These guys are also like cats, unherdable . . . they don’t trust one another.  They all want their own contract, their own budget, their own protocols.  Mark says that he has 50 ethics boards to deal with.  Every single step takes months and months.  In other fields this stuff is turnkey.  Everybody knows who the principal investigators are.  It’s all so EASY.  Even though there are many very qualified high end investigators in sci cure research, the field has not jelled to the point where you can just stick in the key, turn it and make things roll.

My company has done all the grunt labor (and wasted YEARS in the process) on behalf of its product Cethrin, but you MUST grease the skids for these people (gesturing at the academics in the room).

Dr Pearse:  It takes 15-20 million dollars to take a therapy into trial.  When there’s a group of advocates inside the NIH and the FDA, the process is extraordinarly simple.  The CDRPA will create the situation where there’s somebody on the other side of the fence when you toss them the ball  . . I had to toss the ball, climb over the fence, and catch it myself.

The meeting breaks up after Wise thanks everybody, and we mill around for a bit trying to figure out the logistics of who is going where and when.  The 3 Senate office buildings are about 4 blocks away, so the people in chairs need to plan around all kinds of physical issues.

I leave this meeting feeling – just so determined.  We can do this.  We can go get those other sponsors for CDRPA, and when it’s passed the networking infrastructure will be put into place.  The scientists will be able to stay at their benches and do the basic work. My first stop is going to be at Maria Cantwell’s office.

Our friend Todd, who lives in NYC (and is an actor and a lifetime fan of Superman) is about to sing the song a friend of his wrote just after Chris Reeve died.  He’s just described meeting Chris and Dana at a theatre one night in New York.  The song is called “Look at You Now.”  (The friend’s name is Nick Hinton; give him some love here . . . http://www.nickhinton.com/nickhinton.com.html)

They play a video John Smith made from images taken at last year’s rally; I see a lot of faces I’ve been missing for the last couple of days . . . . John narrates underneath the pictures, the story of our efforts to get this bloody legislation passed.  What I see in the images is people looking happy, big smiles ,good friends.  Todd sings the music Dana sang at her last gig, followed by When You Wish Upon a Star.  (Todd’s actually pretty much a star as far as everybody at w2w is concerned.)  John MacDonald gets up to give us a few words . . . and then Todd tells us that actors are always trained to use their voices and bodies to change the energy in the room — which is his way of leading into yet another amazing performance by Professor X.

The greatest guy ever.

There must be a youtube.  I’ll go find one.  Try this http://youtube.com/watch?v=dUWKP_pm_7Y

The guy is able to get everybody’s energy up, even at the end of 2 long days like this.  He rocks, totally  rocks.  So — goodnight and look for the last news from here sometime tomorrow.  We’re doing a congressional briefing at a quarter to early, so I’m going to bed.

Well, I wasn’t going to write during this event . . . we’re eating this very nice dinner in the ballroom while some speakers entertain us.  Wise has spoken with his usual passion and eloquence about what’s happened in the last few years and about what motivates him to get this bloody thing cured.  He’s just so relentless when it comes to making a cure happen.

And so I thought, you know, I’d just eat my salmon and tell about it later.  But then Joe White got up on the stage and started talking about how the CC site helped to get him out of his isolation after breaking his neck.  And that even might not have been enough to get me typing, but then he started talking about Indiana and what happened there.  Still, I’m thinking, I could capture this later.

No.

Joe’s up there showing some beautiful pictures from former rallies and telling about what he did in Indiana — and the picture that made me haul out the laptop one more time was this: Joe sitting inside a little booth he’d made to pass out information about SCI and the cure for SCI at a little fair in Indiana.  He’s sitting up here in front of that image telling us how he started a 5-person support group back home so that he wouldn’t feel so isolated.

The thing is, he’s not isolated because he decided not to be.  Right now, he’s facing a room full of people who are basically glowing with good feelings for him — because he chose not to be alone.  He tells us that he always went to his support group meetings, and sometimes he was the only one there.

There’s a picture of him with Dana Reeve, and another–my favorite– is an image of a few hundred people all wearing the same red and white tee-shirt, walking en masse in support of the cure.  Because Joe White decided not to be isolated, those people showed up and raised $15,000 at that event.

We’re talking about one guy here.  Okay, he happens to be a great guy, but still he’s just one person.  Nobody can tell me that every single person reading this has any less to offer than Joe.  He makes me wonder, actually, what the heck I’ve been doing with my time.  I haven’t organized any walks where real money was raised for the cure.  I haven’t educated my local community about how near the cure actually is — as far as my friends know, it’s still one of those blurry “maybe someday” kind of things.

So, that’s what I have to say about Joe White from Indiana.

After Joe left the stage, our favorite member of congress (Jim Langevin) rolls up and talks with real passion about what’s been accomplished so far and what’s going to happen tomorrow.  The tiny little girl from the yoga class is wheeling around the dining room, talking at this moment with David Zacks’ little boy . . . and David Zacks’ little boy is wearing a small red cape with a blue S in the middle.  I swear I’m not making this up.

I so wish you all were here right now.

We have the woman who taught Matthew Sanford , author of Waking.  There are a number of peopel in chairs here.  Okay, I need to say that it feels amazing not to have a slide show up.  I am sick of slide shows. Ahem.

Jo is (like every yoga-doing woman I know) clearly in great shape, as is her adult daughter, who’s standing by to help with the program today.  There’s a little girl (maybe 5 years old) who has been riding around in a tiny wheelchair.  Right now she’s sprawled on a purple yoga mat next to her brother with her legs splayed awkwardly.

Jo says that yoga is not actually about the physical aspect that everybody thinks they understand.  In fact, the 2 main things are nonviolence and truth . . . followed by the postures.  All these things go together, and it’s important to think while doing the postures of doing them nonviolently and with honesty to your own self.  She’s saying all this while leaning her upper body against a wall facing the group with her feet together, legs straight about a foot from the wall.  She says that you must have a burning desire to do this, and that she believes instilling this desire is what she does best.

She met Matt Sanford 17 years ago.  It’s hard, she says, to know the amount of time they actually spent together working on the simplest things done with the body in alignment — a ridiculous, unbelievable amount of time.  What happens is you start out trying so hard to do just 3 or 4 poses with good alignment, very slowly, very carefully, and never giving up.  The teaching she was doing with him was exactly the same as the teaching with her other students.  After a while he started coming into her regular classes.

It was, she says, simple . . . but long.  Today she’s going to show us the 4 poses that he did very diligently for over a year.

Question:  What about other yoga practices, different from the kind you teach?  Ah, there are lots of kinds–everything from very gentle to hot yoga to blended with other things.  Her kind is called Iyengar, after a 90-year-old teacher who has been doing it since he was 14 years old.  She admits that she’s “biased” toward it, because she’s been doing it since the late 70’s.

AB woman asks if anything we’re going to do will require her to get on her knees . . . Jo says no, not today–but if she needed to do that she could with good instruction, lots of padding.

Question: What did this do for Matt?  The first thing he noticed was the way he could transfer . . . a small piece of a sticky mat became something he carried around everywhere.  His general balance got so much better, and he got a lifted look and feeling . . . his head and shoulder alignment was much better.  He started getting sensation to the lowest part of his spine, maybe after about a year.  This helped him a lot; he says that he learned yoga from the inside, and then it spread to the outside.  (I think this means that he visualized his bones and joints doing what they needed to do to achieve alignment instead of trying to make his muscles obey.)

This guy had two SCI’s and he’s a T4 complete.

Jo says that the simple, truthful aspects — am I really in alignment?  Should I move to another pose when I’m not really in alignment?–these were things she learned from him.

She invites everybody to take off their shoes.  If they’re comfortable.

Everyone is sitting on their mats, cross-legged with towels under their butts.  The movements in yoga are done better on an exhalation than on an inhalation.  Why?  Because if you exhale, you’re just bound to inhale, but if you hold your breath, you’ll eventually pass out.

There are supposedly more than 4 million yoga poses . . . she points around the room and says that the way everyone is sitting constitutes a bunch of variations on a theme.  She has them cross their legs the other way.  She gets behind one guy and helps him straighten his bag.  A young Asian guy just got down out of a power chair . . . a helper took off his boots.

Now everyone puts their palms together, prayer-style while sitting with legs crossed.  Straighten the legs, she says, and they all do.   Keeping backs straight, they use belts (like gait belts) wrapped around the legs where neded to keep the legs straight and together.  When they’re all sorted out, she reminds them all to sit up again.  People are laughing at themselves . . . Jo goes to the front of the room and gets tehir attention again.  The pose they’re in now, sitting up straight with legs together straight up in front of them.  Arms are just behind them with elbows slightly bent.  Butt bones are touching the floor.  The sense of direction is up.  This pose relates to the basic standing pose . . . in the sense that it aligns the hips and the back in the same way.

She tells the little girl that she’s beautiful.  “Thank you.”

There’s a woman kneeling tall behind the guy from the power chair, keeping him upright while Jo’s daughter works with him to beat the tone in his feet so they can point at the ceiling.  They put a rolled up mat between his knees so that he can have some stability with his legs out straight and strapped in that position.

Next is a pose with the knees out and bare soles of feet touching one another.  More laughter . . . she says it’s more important to be in the position where you can sit up straight than to be able to hold your toes with your chest caved in and your shoulders curved.  Your feet should be lined up, and you should put towels or whatever you need to have your alignment be correct.

Really important when you come out of this pose to take one leg out at a time, very gently stretching them, then slowly lie back and bring both knees to the chest.  The little girl is giggling at the sight of her mom, who is really not as good at this as she is.  Women walk around the room helping those who need it to get to this position.  Then they all (more or less) roll to the side and get back to sitting position with legs crossed or straight in front of them.  They hold their arms straight out and then (if possible) slowly lift them.

One of the helper women is sitting close behind a disabled woman, giving her balance while she lifts both arms all the way up.  (For some reason I am emotional watching this . . . memories of rehab, trying so hard to help, feeling with my own body how hard certain things were.)  Now they lower their arms and then lift them again, this time with their palms in.  “Bring them up, hold them for a second, bring them down.”

Put your awareness on the center of the palm of your hand and keep your thought there while moving the hands straight out and thinking of moving that awareness all the way to your finger tips.  When you bring your arms down, don’t bring everything else down . . . it’s as if you have to lift your sides to keep them from falling.

Now the Asian guy has a woman on each side getting his arms out, plus another kneeling behind.  He’s in the same position as everyone else in the room . . .

They do the cobra, and the child’s pose, They stretch their backs again by lying on them and the little girl glances at her mom and says, “You gotta do it too!”  Now a wide-open legged pose with arms outstretched, palms down.  People are working with her, in spite of clonus and tone and wobbly trunk muscles.  Sometimes they look at her with ironic expressions when she gives them an instruction, but they’re so game.

It’s fascinating that this is even possible.  Here’s a link to information about Matt Sanford and yoga for people with SCI ~http://www.matthewsanford.com/

She’s showing us how to get ready to breathe.    You get a rolled up towel placed under your neck so that you’re in a comfortable position, with the head neutral and supported under the neck.  Put a few rolled up mats under your knees, ah.  Arms at your sides, fingers relaxed and open.  She dims the lights and asks everyone to relax . . . the shoulders, arms, eyebrows, eyes.  Let gravity hold you and take you.  Become broad.  Eyes, cheekbones, ears, mouth . . . lips touching lightly, tongue relaxed.

She’s leading them through a breathing exercise which would sound  if I spelled it out on this screen.  What you should picture is the darkened room with all these people completely chill on their backs and a slim blonde woman moving around the front, gently reminding them to relax.  Normal inhale, slightly exhale.  Back to normal breathing.  The pattern is a couple of normal breaths, then one with a normal inhale and slightly longer exhale, back to normal . .. then the other way, slightly longer inhale with normal exhale, then a couple of normal.

Someone just snored, very sweet and soft . . .

She goes right on, and now they’re doing extra on both the inhale and the exhale . . . only one or two, then back to normal.  It’s perfectly quiet.

Okay!  Afternoon in the ballroom . . . we start with Marilyn Smith introducing Rachel Hammerman and Michael Mangienello, both of whom have helped out with this event again and again over the last 4 years.  Rachel goes first; she’s saying that every one of us has a set of handouts for our legislators.  There’s a set for us and a set for each person we meet with.

Our asks: Pass the CDRPA, increase funding for research at the NIH, make insurance companies, Medicare, Medicaid to fund  adaptive equipment for use in homes and private rehab centers.

Michael’s turn:  “This is my favorite weekend of the year, when you guys come.”  He met Dana when they were 25 years old, waiting table in New York.  The Reeves weren’t fancy Hollywood folk, they were just actors who lived on the east coast and their lives were in chaos.  Michael says he was petrified walking into Chris’s room.  “This was a guy I had played tennis with . . . “  Very soon he realized that Chris was still Chris.  Chris didn’t want anything — not his name on a building, not recognition, nothing.  He just wanted to get out of his chair.

For the rest of the world, SCI was just not on anybody’s agenda.  That changed after Chris’s injury.  For the longest time they didn’t actually ask for anything specific about SCI.  He did meet with the Clintons and managed to get $10 million, which was better than nothing.  Dana was the person who decided that quality of life was just as important to people with SCI as the research.  He and Dana used to sit in the back yard going through a series of  QOL applications, having a little wine and weeping over the ones that involved children.

Mike is saying that the bill named after Chris and Dana has made more progress since they passed on than it did before.  Our presence has changed the equation.  There are a million “disease groups” out there who would give their eye teeth to get their bills as far as ours has; Michael has sat there with people representing Parkinsons’ and Alzheimer’s, and their bills are just sitting there.

Senator Coburn. He has placed a hold on our bill for reasons no one can really understand.

Ahem.  As frustrating as it is, my highest recommendation is that he not be targeted at this point.  We believe there will be movement on a handful of bills and we want ours to be one of them.  There’s nobody I’d rather antagonize at this moment, but antagonizing him at this moment is the wrong thing to do.

If we could get 80 sponsors to sign on in the Senate, we would be unstoppable.  80 sponsors.  Unstoppable.

He says that our presence has raised so much awareness about this bill that it can’t be overstated.  He says, it doesn’t feel like it, but you guys have already won.  The president is going to get this, and he’s going to sign it.  Chris’s kids will be standing there.  (Now, that’s a fine image.)

Okay . . . we also need dough.  Passing the acts will only matter if there is funding to carry out what’s in them.

Rachel is now reminding us to use our own stories to give the Senators something to tell about when they give a speech explaining why they support this legislation.  Picture them in front of the C-Span camera and remember what they like to say:  I just talked with a constituent from my state yesterday . . .

And if your own delegation is already signed on, go and see them anyway and say thanks.  Ask them to help you convince other members of the Senate to sign on and sponsor this bill.  The co-sponsor list needs many more names.  You can use www.thomas.gov and look for S1183 and it will tell you who the current co-sponsors are.  That list, ideally, includes everybody who isn’t named Tom Coburn–because he has placed a hold on it and will never sponsor it.  The purpose of the long co-sponsor list is to get this one man’s attention and convince him to release his hold.  Once the hold is released, the bill will pass easily.

Question: Do we care that the co-sponsor list in the House doesn’t have everybody’s name on it?  No, because it’s been passed there . . . in fact it passed UNANIMOUSLY.

Long conversation about how there’s no logic around what Coburn has done . . . he also has a hold on a bill that would create a registry for ALS patients.  It makes no sense and there’s no reason to focus on him — because doing so will not help.  It might very well hurt.

We keep talking about legislative meetings — the strategy, how to focus, what to do after, how to follow up — and they finally say that people who want to can have their cell phone numbers.  Get the packets.  Go talk to these people.  Make it happen.  80 – 33 = 47   We can do this.

Ballroom session over.  Adaptive yoga starts in 20 minutes, oh boy!

Next is technlogy from Bioness designed to deal with the problem of foot drop. It’s apparently a stimulator that goes off and on during the gait cycle, intended for use to provide ankle dorsiflexion.  The potential user must have an intact peripheral nervous system.

The thing consists of a cuff with an e-stim unit.  It looks like a little knee brace–not an afo, but just a cuff like you might wear if you had a knee injury.  Theres a small control unit that turns it on and off and regulates the intensity; it also has modes for walking and for doing pt.  Theres’a gait sensor that actually allows for adaptation to the environment, including edema and spasticity.

The electrodes go on the leg in 2 places, one on the side of the knee and one in front that activates the tibialis muscle.

She’s got a video of the sensor detecting pressure on the heel and sending a message up to the cuff to tell it when the stim should be on or off.  It knows how much tone the leg is having, and it goes into sleep mode when you’re not walking.  It knows when you’re on grass or gravel or pavement.  The control unit is wireless.

Oh good, a demo –

A man walks up with one of these cuffs attached to his leg, his pants rolled up so we can see it.  His name is Duane Morrow and he’s an incomplete quad who broke his neck playing rugby in England.  he had no feeling below his chest and no movement below his chest.  He’s sort of a poster child for pushing the edge with aggressive re-hab; at one point he got the baclofen implant we talked about earlier this morning, because he had a stomach issue that left him with ridiculous spasticity. . . this got him back into therapy.  He was at the Shepherd Center and when he had met all his goals there he challenged them to do a program like Extreme Therapy.  that’s what the Shepherd Center has going on now.

He’s got 5 kids born in 3 states in 2 countries . . . he says, “the last thing I wanted to be was a burden to my wife.”

Aetna covered the Bioness unit after 6 months because he was able to go back and get them to see that it had actually served a medical purpose and made him better.

Question: Compare this to your usual orthotic.

The biggest difference for me was the knowledge that I was going to have to wear that afo forever.  So I went and got a fancy carbon super light one . . . but this is not supposed to have to be used forever . . . it’s a neuro-rehab tool as well as an aide to prevent foot drop.

Studies show that it works much better than an orthotic.  It costs $5,900, but the company works with clients to set up trials and payment plans if necessary.

Question: How much muscle strength do you need?  You can be 0 out of 5 w/the dorsiflexor and this will still work.

(I’m personally excited by this because it sounds perfectly designed for a certain walking quad I know. )

Argghh, two more speakers!  This is such interesting stuff–I want time to process it but that ain’t gonna happen.  Next up is a woman named to tell us about the latest in FES cycling.  Her machine is the RT300, and Josh Basile is going to get up on the stage and use it while she talks

So, she says, sometimes she asks people with SCI what they do for therapy? The usual answeris, stretch.  What do you do beneath the level of your injury?  The usual answer is, silence — and that’s what this presentation is about.

We all know it.  Exercise is good for you, and FES is one way to get it.  It’s stimulation to the peripheral nerves that allows your muscles to get a workout.  It relaxes spasms, slows disuse atroophy, increases blood circulation, and increases range of motion.  It can also keep you in the world.

They have 2 systems, one for arms and one for legs, which must be done separately.  You do this from your own chair, meaning no transfers.  It’s connected to the internet and knows your settings.  It also adjusts them for your needs.  It combines the motor and the stimulation and adjusts constantly to your performance.

Sometimes she hears from people who still get fatigued after 10 minutes even tho’ they’ve been doing it for 2 years.  The leg electrodes go to the quads, hams, and glutes.  On the arms, you put them on biceps, triceps, and shoulde — or you can put ‘em on deltoids and wrist.

Josh is up front doing this right now without leaving his power chair.

The goal is 1 hour of active therapy 3 x per week.  There’s a warm up, an active transition, an active portion, a passive portion (if needed) and a cooldown.

The internet connectivity component keeps the company in touch with you. . . it knows how much you use the machine and how often and what you do with each session.  (They will call you if they see that you’re not using it.

Reimbursement for this equipment was over 36% in 2006.  Why not higher? Because medicare national coverage decision 160.12 is a barrier.  One of our asks of the legislators tomorrow will be to have insurance companies and medicare/medicaid pay for this kind of equipment.

Josh  (determined2heal.org)  has been cranking away on the stim-bike  for a while now . . . he became an outpaitent at Kennedy Kreiger in 2005, and he got one of these machines then.  He cycles 4 days a week, and reports that it has increased his muscle mass a LOT, and that his range of motion is much better. “I like looking down and seeing my legs pumping.”  He’s kind of puffing and huffing, tells us it’s a good workout, and that’s obvious.

A woman in the audience says that her daughter (C3) has been able  over time to be able to use this machine without her vent.  She’s also stayed healthy and has not been back in the hospital since her injury.

(A short break while I go to find that rugby player whose walking issues are so like my husband’s, and then it’s back to speakers.)

Dr. Cristina Sadowsky of Kennedy Krieger:  “Medically Living with Chronic Spinal Cord Injury”

She’s got an outline up that names all the health issues people with sci face.  It’s grim, okay.  Basically all the body functions are compromised and all the systems are in jeopardy.  Pulmonary, cardio, metabolism, skin, musculo/skeletal, gastro-intestinal, genital/urinary . . . yikes.  The worst enemy is pneumonia — although 25 years ago it was genito-urinary issues.  UTI doesn’t kill injured people nearly as often as it once did.

She’s going through the wretched statistics about how dangerous it is to have sci compared to the AB population.  On the screen is a slide completely filled with text and numbers, all of which add up to tell the story: there is a very good reason to make use of the technologies we’ve been hearing about all morning.

Advice: Get lipid profiles done every year if you’re over age 20.  Eat nuts, olive oil, shellfish, salmon and limited carbs from cereal, potatoes, white bread, and snack foods. Quit smoking. Not more than 1-2 drinks per day. Take niacin. Find a way to get regular aerobic exercise.

I haven’t written down much of a summary here . . . not because the information isn’t important but because so much of it is very well known to this community.  People with SCI have every reason to look after their health — many more reasons than AB people.  The therapies we heard about yesterday are not going to be ready next week, and the therapies we heard about this morning are ready RIGHT NOW.  If you’re reading this, you already know what to do without hearing a litany of the dangers.

Now a demo . . a woman named Kaitlin Smith from Biometrics is going to show us a new use of emt signaling — she’s a speech pathologist and she s going to show us how this works with this guy named Brandon who is here from Nebraska

He wheels up to her display.  She’s got electrodes already on his inner arms, which are allowing the machine to read his muscle activity in microvolts.

Okay, so Brandon is twitching a muscle and making the computer say out loud a phrase from a list on the screen  . . . the demo is going kind of rough, but it’s easy to see how much this would mean to someone with ALS, especially.

After some horsing around to get the sound to work, she shows a movie . . . a guy with ALS who can’t do anything at all . . . the neuroswitch allows him to use a computer to do basically whatever any other person can do with a computer. . . it’s wonderful, really.

Next is a neuroseurgoeon named Beverly C Walters who’s going to talk about neurostimulation for early spinal cord injury.  She’s the only civilian neurosurgeon working at Walter Reed.

She’s here representing Cyberkinetics, tho’ she doesn’t work for them — she’s independent.  Her job is to design clinical trials.  She’s here today to tell us about a device that looks about as big as an ipod.

She refers to the device as OFS; I’ve only heard rumors of this until this minute, but it’s intriguing. Right now it’s been used  only for semi-acute T injuries.  About 2 weeks post injury it’s implanted outside the spine, (not touching the cord, just the vertebrae).  It stays in for 15 weeks and is then removed.  It works by sending an oscillating current through the injury site, which as it turns out, causes axons to grow across.

So why should we care, if this technology is only for new injuries?   First because we spread the word, and second because the next iteration will be made for chronics.

The technology is based on the fact that nerves will grow toward a negative pole.  There are 240 publications out about this that involve studies with animals.  They’ve studied it with dogs who had naturally occurring sci.  They treated these dogs and sent them home.

There’s a video up af a nerve fiber growing toward a negative pole, but the one that’s trying to grow toward the positive pole is crapping out.  It turns out that  if you oscillate the poles, you overcome what’s called die back so that nerves grow in both directions.

They’ve used this device on 14 patients in a trial; the entrants were clinically complete ASIA A , no transection or gunshot wounds, there were 8 cervical and 5 thoracic injuries, each one got the implant within 18 days of injury and had it removed at 15 weeks.

What happened was improvement in sensation and motor, but mostly in sensation.  The light touch improvement went from an average of 30 to 60, , and the improvements in motor were small but measurable.

So, was the difference due to the device or spontaneous recovery?  Why spend the time and money ($250 million) to do a randomized big study?  Instead they compared what happened to their patients to those who were participants in the existing NACSIS III study . . . and the Sygen placebo group.  When these comparisons were done, the OFS stimulator patients did much better.  Good evidence.

The OFS patients also had NO neuropathic pain.  And a lot of them had bladder sensation as well.

What’s the safety issue?  There isn’t any.  The patients were glad they had it. She’s got a video up of patients talking about their sensation — bladder, bowel, sexual sensation . . . “you’re not laying there thinking about other things because you can’t feel what’s going on . . . I know how demoralized  and how weak I felt . . . when people say, ‘can I help you, can I help you’ it feels so good to be able to say ‘No, I got it‘.”

They’re currently waiting for FDA approval . . .

If you had cancer, they would pay for whatever you needed.  She says, “When I had cancer they paid for everything I needed, including reconstruction — and I would have given it all up if just one of you could have had access to this device.”

You know, I think they should really figure out something else to call these rooms . . . I mean, when was the last time a ball was held in this room?  For one thing, it’s carpeted.  Okay, I’m back to work now.

Sue Maus is introducing Jennifer French of the Neurotechnology Network.  The focus of today will be how to stay healthy while the researchers finish off the cure, and how to use technologies that are available right now to maximize well-being.

Jennifer French of the Neurotech Network is going to run this show; she rides her chair up the ramp and then stands up behind a walker. That’s demo #1, because she’s using technology to get up, and part of the program is going to be her explanation of how that works.

The Neurotech Network is a nonprofit that focuses on education of and advocacy for access to neurotech devices and therapies.

“Neurotech”  is the application of medical electronics and engineering to restore or improve the function of the human nervous system . . our bodies already know how to use electrical signals . . . neurotech is NOT a cure, but it can provide ways to fight secondary conditions and stay healthier.

Not every injury is the same, and neither is every kind of neurotech.

There are 2 categories . . internal and external .  . internal is like pacemakers, external is completely outside the bod.

History:

1950-1970 – many firsts for implants – hearing implants, brain electrodes, visual cortex

1969  – NIH neural prosthesis program ( no doubt due to returning Vietnam vets)

1976  – FDA began to regulate implant devices

1980’s -  advances of new technology and electronics – like computers, things got much smaller and better

1990s – typical move from the lab to the market – lots of weird things were tried and discarded.

2000 and beyond -  device availability  -  think about how many people are walking around with cochlear implants that restore their hearing.  (It would seem odd NOT to take advantage of this technology, eh?  But it’s hard for lots of us to get past the wish for a more natural cure.  Just my opinion.)

Some areas within neurotech

Neuromodulation . . . which is about devices and therapies that allow the body to adjust — deep brain stimulation helps people with Parkinson’s by modulating tremors . . . it also helps with neuropathic pain.  There is also spinal cord stimulation, which blocks pain signals.  There is sacral nerve stimulation, which keeps overactive bladders from messing with people.  Transcranial magnetic stimulation treats depression.  Surface stimulation is good old e-stim.  Implanted drug delivery systems, she says, we’re going to get to later with a demonstration.

Neural prosthesis, which capitalizes on the existing nervous system to help a limited function.  They’ve invented a foot-drop stimulator; later we’ll get to see a user .  There is FES for hands and FES for feet.  There are bladder stimulators for both flaccid and high-tone bladders.  There are breathing systems that let some people breathe without vents.  There’s a cough assist device.

Neurorehabilitation, this is things like e-stim, plus neuro-regeneration stimulators, neural re-education systems and neuro-robotics.  (It alls sounds crazy high-tech and kind of out there, but there are people in this room right now who are benefiting from many of these technologies, which is the point.)

Neurosensing and diagnostics; this is about peripheral nerve sensing devices, which are on the market for diabetes, carpal tunnel syndrome, and sleep monitoring systems for those of us with apnea.  There’s a brain – computer interface that uses electrodes to sense the cortex.  There’s pressure alert, which lets chair users know when the pressure is getting dangerous, and EMG sensing which together with neuromuscular stimulation lets your muscle know when the  brain is telling it to move . . and then moves it.

Resources: www.neurotechnetwork.org, a newsletter, user experiences (which is what today is about), a central database of neurotechnology that is searchable by condition.  (That’s cool.)  Finally there is the neurotech awareness coalition, which coordinates between patient groups and those who offer resources to them.

Challenges include insurance reimbursement.  The decision not to pay for any of this is now 10 years old, which means that it was made in the very early stages of the technology.  Another challenge is the utter lack of knowledge out there, either among end users or the medical pros.  There are also regulatory barriers, mostly due to ignorance.  Finally, tere is the Last Resort Syndrome, which is the notion that these technologies are so tentative and bizarre that you wouldn’t use them unless you were truly desperate

So, how did Jennifer stand up at the beginning of her talk?  She has implants in her quads, glutes, hips and lower back.  These are connected wirelessly to a box the size of a box of cracker jacks she wears at her waist.  “I walked down the aisle at my wedding, using this technology.

Whoa she talks fast — I’m pretty sure that was an hour-long lecture delivered in 15 minutes flat.

Now Kelly Emmett from Medtronix is going to talk about Neuro-modulation and spasticity control- the implanted baclofen pump.   Kelly, who is a physical therapist, is explaining what spasticity is, not that anybody here needs an explanation.

She’s showing a video of a man who can’t sit in a chair because his spasticity prevents his legs from straightening.  They’re bent at the hip and the knees.  She says that lots of people are in nursing homes because of resistance to using the baclofen pump .  The video shows her trying to move his leg; the more she’s pushing, the more he resists.  So, just before she treated him his neurologist came in to say that this was the best day he’d had in months and maybe she should hold off.  She’s saving the punchline . . . has a slide up about the secondary effects of spasticity, which we all know: contracture, skin breakdown, pain, lack of sleep, lack of opportunity and access.

Showing another video: severe clonus in a patient’s foot, then the foot in a boot, and another with a patient’s curled fingers, then again relaxed.  She says that the baclofen pump should not be a last resort.  It’s an implantable drug delivery system that reduces spasticity and prevents or reduces secondary problems.  It’s a reversible FDA approved drug therapy.  It works for spasticity due to spinal issues or brain isues, and it’s safe for both adults and children.  It’s also not forever . . . there are many patients who have used it and then gotten rid of it.

The way it works is, they give you a test dose through a lumbar puncture, usually done as an outpatient procedure. They put a pump into the side of the patient with a catheter that connects around T10.   It releases the medication by a little computer.  The fill the thing every 3 or 4 months right thru the skin at the doctor’s office.  People tolerate this procedure easily, (including children).  The dose can be continuous or in time released boluses.  You can alter infusion rates throughout day and night.  People with MS often find that they like to turn it up at night.

Complications include over and under-dosing (just like with oral meds), withdrawal, side effects, infections, pump failure, catheter complications like kinks or dislodgement.  Ha, Kelly says she knows a guy who has bungee jumped with the catheter in.  That dislodged it, and she doesn’t recommend it.  Jeebus

Okay, back to the video of the guy in the nursing home with bad spasticity.  There’s a split screen showing her moving his legs pretty easily 3 hours after the first bolus of baclofen.  He got the implant.  It took him 3 months to get out of the nursing home — he wanted to walk and that didn’t happen, but he did manage to master independent transfers, which allowed him to be back in the world.  Not a small thin

More info here: spasticity.com, medtronic.com, wemove.com, or email her directly at colleen.k.emmett@medtronic.com

Question: What’s the size of the pump? She goes to get one out of her bag.  From where I am in the back of the room, it looks like a compact–the thing my grandma used to put her makeup.

Does it bother people?  She says most people are aware of it in the same away you’re aware of a cell phone on your belt.  Once they get used to it, it doesn’t bother them, and unless it’s actually touching something it shouldn’t, there’s no pain

Yikes, missed some questions . . . these people are cramming their talks in at warp speed.  It’s a challenge to comprehend, process, choose what to leave out, and get coherent notes.  Apologies to those speakers who read this and feel like I’ve missed something important — please feel free to use comments to revise and amplify!

The name of the talk is Decorin and GRP-derived astrocytes.  The video Bruce made of his talk last year is on youtube, for those who want to see part A.  I’ll go find a link if I can before I post this.  This is it: http://youtube.com/watch?v=QnBsnhzy1Ug

The glial scar is a physical and molecular barrier to axon growth — a fact that’s been known for a long time.  There’s an image up from a 1999 article in the Journal of Neuroscience that shows the green lines of axons straggling toward this thing that looks like a joint in a knee, where they stop dead. It’s the injury site.

His lab has been after 2 strategies:

Overcome scar and inhibitors to promote axon regeneration/plasticity.

Replace lost glia to bridge axon growth across the injury site.

What’s the right cell type for a bridge?

Non-CNS cell types (Schwann, engineered fibroblasts, olfactory ensheathing cells, macrophages, esc’s, marrow stromal cells) plus CNS cells, and 70% of adult CNS cells are astrocytes . . . but there are different kinds. Can we make the right kind?

Embryonic Stem Cells give rise to neuron prestricted precursors and glial restricted precursors (GRPs).  GRP’s can make either GDA Bmp or GDA gp130’s

The BMP’s have low inhibitor levels, they’re high in growth factors, and highly supportive of axon growth.  The gp130’s are the exact opposite.

So, where do you get grp cells?  From esc’s, unless you can genetically engineer the adult stem cell . . .a process that is not done yet.

So when you transplant the gdabmp’s what happens?  A ton of cells migrate into the margin of the injury and they align themselves very neatly — the opposite of what happens normally, where cells are all mixed up and helter skelter. They actually measured the misalignment between axons as about 59 degrees without the astrocyte gdabmp and 11 degrees with it.

These are the same slides we saw last year, and they still knock me out. All this was published in the Journal of Biology last year, after Dr. Davies was good enough to share it with us.  So what about functional recovery? The rats that got the good astrocytes are at almost full recovery — and the ones that got the bad ones get nada.

Neuropathic Pain . . . (sometimes called allodynia) can be made WORSE by implanting “naive” neural stem cells.  They turned into grp’s, then the bad kind of astrocytes, and pain was the result.  So they tested gdabmp, gdagp130, and grp’s — the rats that got the bmp’s were like normal rats, but the others were in serious pain–so serious that they had to stop the experiment ahead of time.

This is a major reason for people to hold off on the idea of getting any kind of undifferentiated stem cell injection to get recovery.  It’s not unlikely that the result will be more neuropathic pain.

Bottom line: the bmp astrocytes are all gain and no pain. I like that combination.

Okay . . . light speed information coming our way now.  It’s the trade names of the dozen of so kinds of molecules that inhibit axon growth, some of the sugars and some of the core proteins.  The little buzzards build themselves into a kind of scaffold.  Gah, and what’s worse is that some of the molecules that had been thought important to growth carry the inhibitory molecules.

He shows an image of the cord just after injury and six months later.  The one right away shows an injury site full of molecules, and six months later the barrier is physical.

Decorin does all sorts of good things in the injury site.  It promotes the degradation of scar tissue.  It increase levels of Plasmin, which promotes axon growth, suppresses synthesis of inhibotors, promotes degradation of inhibitors, promotes increase in growth factors, desensitize neurons to inhibitors.

Here’s his new data

If you put adult sensory neurons right on the adult spinal cord myelin, they grow very slowly, but if you add some decorin, they grow 5 x faster.

AND, if you put then put them on inhibitory molecules, you get nothing (as you would expect) . . . but if you combine them with decorin and then add them to inhibitory molecules, the axons grow 14.5 times faster.  So, the magic Decorin directly boosts the ability of neurons to grow axons on both cns myelin and inhibitory molecules.  (Why does it like inhibitory molecule environment so much? Don’t know . . .)

Bottom line: gdabmp’s and decorin are new, complementary repair strategies for acute and chronic sci.

Next steps:

We need new ways to make those gdabmp’s, then test them in combination, then test them in acute and chronic, develop human gda’s at gmp level. This is looking very good — a strategy that works so well at the bench is rare.  So how long before we see this in clinical trial?  As usual, there are too many factors involved to even make an educated guess.  But if Dr. Davies’ energy for this project is related to the time frame, it will be short

Dr. Simon Archibald, chief scientific officer of Integra Life Sciences corporation.  “I used to be an academic scientist . . . my area of interest is in peripheral nerve generation and learning more about how to regenerate the cord.”  he left the academic world and went to Integra in 1997 — at the time it was a small biotech company.  They did a translation, which is the word these guys use to talk about the process of getting from a lab to a clinic.  The company grew by a factor of 20 by developing 2 main products, both of which have to do with the nervous system.

Okay, so the traditional way to do science is arcane, impractical, and slow.  (We know.)  The process of product development is not a linear list of tasks . . . it’s a mind map for those who know what those are — a jumble of blobs with looping interconnections and decision points.

Decorin was a compound that had been produced by a company that went bankrupt . . . which means that it’s been a struggle to get Decorin back on the list of “good things”.  It was famously used in 1999 by a woman in the UK who showed that it worked very well to prevent scarring in brain tissues after knife wounds.   She turned her lab over to the project of working with Decorin, but the 2nd batch she got from the supplier was bad . . .and she crashed her whole lab.

Dr. Archibald is droll, making little jokes . . . “Thank God we transcended the mice.  The little buckets and the little stools were too expensive to keep producing.”  He’s referring to the new sources of Decorin — the old one was from mice milk.  At one point their supply of mouse milk was in a refrigerator in California . . .

Integra is not a drug company, it’s a device company.  Their interest is in making the instruments that will eventually make the delivery of the treatments possible.

He’s telling us about therapies that exist to regenerate peripheral nerves, and I’m not writing down the details, altho’ it’s interesting stuff and I’m sure will one day become important to us.  My brain could totally use a bit of a transplant to juice it up at this moment.

Question: Is Dr Davies collaborating with anyone?  Other labs?  What about Keirstead’s lab?  He says he reached out but nothing has come of it as yet . . . obviously it’s a goal to speed things up by sharing information and creating joint strategies.