Working 2 Walk

Just another weblog

Legislative visits

Posted by katewillette on April 15, 2008

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  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.

Posted in maria cantwell, paralysis, spinal cord injury | Leave a Comment »

Congressional Briefing

Posted by katewillette on April 15, 2008

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.

Read the rest of this entry »

Posted in Cethrin, NIH, paralysis, spinal cord injury, Wise Young | 1 Comment »

More Banquet

Posted by katewillette on April 15, 2008

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 . . .

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

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.

Posted in Uncategorized | Leave a Comment »

Capitol Hill Kickoff Banquet

Posted by katewillette on April 15, 2008

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.


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.

Read the rest of this entry »

Posted in Advocacy, isolation, Langevin | Leave a Comment »

Yoga Report

Posted by katewillette on April 14, 2008

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.

Read the rest of this entry »

Posted in paralysis, spinal cord injury, yoga | Tagged: , | 1 Comment »

Michael and Rachel

Posted by katewillette on April 14, 2008

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.

Read the rest of this entry »

Posted in Advocacy, Christopher Reeve, paralysis, spinal cord injury | Tagged: | Leave a Comment »

Morning in the Ballroom Part 3

Posted by katewillette on April 14, 2008

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.

Read the rest of this entry »

Posted in paralysis, spinal cord injury | Tagged: , , , , | 1 Comment »

Monday morning in the ballroom – Part 2

Posted by katewillette on April 14, 2008

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.

Read the rest of this entry »

Posted in Neurotechnology, paralysis, spinal cord injury | Tagged: , , , , | 2 Comments »

Monday morning in the ballroom – Part 1

Posted by katewillette on April 14, 2008

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.

Read the rest of this entry »

Posted in Neuropathic Pain, Neurotechnology, spasticity | Tagged: , , | 2 Comments »

Breakout Session 4: Dr. Davies and Dr. Simon Archibald

Posted by katewillette on April 13, 2008

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:

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.

Read the rest of this entry »

Posted in Clinical Trials, embryonic stem cells, Uncategorized | Tagged: , , , , | 1 Comment »