Keynote Speaker: Josh Basile

Advocating With Your Mind and Body

Josh:

“You’ll never walk again.” Almost everybody in this room has heard those words before. Destructive words. Reeve said that it’s not a matter of IF but WHEN. And we’re here to make sure WHEN is closer and that no family ever has to hear those words again.

The symposium is all about that — bringing together people to make this happen. In this room we have all the pieces of the puzzle. Quads, families, caregivers, scientists, regulators, funders.

My injury happened in 2004. I’d just finished my first year o college. I was at the ocean in Delaware . . . I turned my back on the water, and it picked me up and dropped me on my head, shattering my 5th cervical vertebrae. I heard a crack. i couldn’t move or speak, but my friends saw me

Went from a 185# college athlete to a 135# quadriplegic. I remember being wheeled up my driveway and through my garage, where my old tennis rackets and soccer gear hung. My life was going to be different. I spent a lot of time thinking about what a struggle it was, and in 2005 formed a foundation called Determined2Heal. I started mentoring people around the country.

I started making youtube videos and organizing them into categories by physical functionalities. That turned into Spinalpedia.

Since then I finished college and law school and passed the bar. So, enough about me.

The billion dollar question is what to do? Here’s my program.

  1. Find your own voice
  2. Let yourself be seen in the world; live an active lifestyle; turn heads; the more of us that are seen and heard from, the more dollars will be spent to improve our situation
  3. Share your experiences; we have youtube, facebook, twitter, instagram, pinterest, carecure community, spinalpedia
  4. Hone your skills; whatever they are, there’s a place where they can be used
  5. Use statistics; convince the world with numbers. The ones that speak loudest have to do with dollars and sense. The NIH spends 3 billion each year on 1,218,400 people with HIV/Aids. They spend 81 million on 1,275,00 people with SCI.  Talk about the lifetime costs of injuries. We can only see results if we invest. InVivo estimates that the Chronic SCI market is over $10 billion right now.
  6. Meet science halfway by doing what it takes to keep your body as healthy as possible. I developed my home therapy program at kennedy Krieger — I had to because I couldn’t go there 3 days a week forever.
  7. Volunteer to be in a clinical trial

I was at the very first Working 2 Walk rally 10 years ago. I had so much hope then . . . and I’m happy to say that we’ve made progress. Epidural stimulation, exoskeletons, neuro-spinal scaffolds, and so much more.

I can’t wait to find what the next decade brings. Change happens not overnight but over time — as long as we keep pushing. The day will come when people say this to people like the student I was: “You will walk again.”

Much cheering. He’s a remarkable person.

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Advocate’s Award

Marilyn Smith: This year’s recipient has been coming here for many years; she was injured in 2001 and was part of the cure movement from the beginning. When I first started networking, her name was one of the first to come. She continues to travel the world and meet with scientists, clinicians and other patients.

She left her for-profit job and founded an organization called The End Paralysis Foundation, which is working now to bring chABC into trials. She’s from the Netherlands. Big hand for Corrine Jean-Maire

Corinne: I’ve been waiting for years (joking) . . . it’s a surprise, and the thing is that they don’t tell you in advance and so now I must think of what to say. I would say that I’m much less than an amateur — just trying to do my best. I really believe that there will be a cure out there, but not tomorrow. There’s quite a lot of work to do, of course. Something you see in many organizations is that people lose track of the goal . . . we can’t allow that to happen.

At End Paralysis Foundation, we pay attention to the big numbers: GLOBAL CHRONIC SPINAL CORD INJURY. Let’s work together, all of us. The goal is a cure, which is going to have to combine all kinds of approaches.

Please go like my facebook page; I’ve worked for months on this combination to win $50,000 Euros, which will go to the chondroitinase project. Here’s the link.

Justin Brown: Clinical Program for Paralysis Reversal

Hey, I know this man from the 2012 Working 2 Walk program. He’s from the University of California at San Diego Paralysis Center

He does surgery for treatment of functional loss due to injuries of:

  • peripheral nerves
  • spinal cord injury
  • brain injury from stroke, TBI, tumors, etc

They work by looking at what’s been lost, asking what’s most important to get back, what they have that’s still working, what besides surgery might help . . .

They do this: tendon transfers, nerve transfers, muscle transplant . . .

If you have an upper motor neuron injury, stimulating the muscles will make them move. If you have a lower motor neuron injury, you get nothing from stimulation. That’s how you can tell.

How do you fix a lower motor neuron injury? You transfer axons. He’s showing an example of a young man whose face was paralyzed (:( ) And a little girl, same thing. Nerve transfers to original muscles. The concept here is always the same:

The body has a certain amount of built in extras. Extra axons bundled into nerves, which can be spared to get to work in places that aren’t their original places.

Can this work even years out? Showing the right arm of someone whose injury is c6/7. Very atrophied. Fingers useless. After nerve transfer and rehab, he’s got pinch, but hard to tell how effective b/c no video.

A chronic young woman who had a syrinx that destroyed her function in wrists and biceps. They took muscle from her back and she’s on a video flexing her guns.

What about flaccid legs with no spasticity? Got nothing for those injuries yet.

Okay, all that was lower motor neuron stuff — flaccid injuries that don’t respond to stim.

Next part is about upper motor neuron injuries . . . axon transfer works here. Showing a video of a young woman who’s a year post her surgery on one arm. She’s flexing her elbow quite nicely. It works. The other one, nothing.

Video of a guy’s hand . . . he was 10 years post and got function back in his hand. (audience claps — there are lots of people in this room who’d give a lot to move their fingers like the guy in the film clip).

Justin’s talking about strategies for every level of cervical injury. Worth checking out if you’re up for the surgery and the long rehab. How about spasticity? Wow. Video of a guy who had so much spasticity in his shoulder that he couldn’t get his hand to his face. They trimmed some of his nerves and within 3 days he was able to do it.

In summary . . . they’ve been working for several years to figure out the best ways to do this for every single person who lives with any kind of dysfunction due to SCI, and they’re able to help almost everyone in the upper body. It means surgery. It means — in some cases — long, long rehab.

Q: Talk about the choices patients are being asked to make . . .

A: Nerve transfers in sci patients are not well understood by everyone who is trying to do them . . . it’s an early field and we don’t have the necessary standardization. Tendon transfers work reliably. Nerve transfers are a lot more iffy.

Q: Does insurance pay for this?

A: Yes. All of them except one so far.

Q: What about neuropathic pain?

A: Anecdotally, the more function you get in the limbs, the less neuropathic pain.

Q: (couldn’t hear it)

A: I can do what botox does a whole lot more efficiently with this kind of surgery.

Q: Talk more about “trimming nerves”

A: You can take 4/5 of the axons and what’s left will still be effective.

Q: Can muscles get overused?

A: Our bodies adapt to the needs that are placed on them . . . of course when you’re older it takes longer and doesn’t work as well.

Q: Do people lose function over time?

A: There is some loss with age — decades later.

Q: Is there return of sensation?

A: Not with what we’re discussing here.

Q: What’s changed since your last presentation?

A: More experience. Recognition that both muscle transfer and nerve transfer have their place.

Science Time: First-in-man Clinical Trials on Directly Re-programmed Autologous Neural Stem Cells

Oh, joy, Barry Long is going to emcee the rest of the day. He’s up there now talking about his injury . . . motorcycle crash. He just described himself as one of those “super-gimps” who bungie jumps, skydives, all that. And he does motivational speaking all over the country. Describing his 10 yr old daughter telling him recently at a family wedding that she wishes he could walk her down the aisle . . . and that’s why they’re here. Because some of the people who are going to make that possible are in the room. (applause, amen)

The speaker is going to be Jan-Eric Ahlfors of New World Laboratories, Inc.

He takes the stage.

15 yrs ago I never thought I’d end up here . . . but one summer I got an internship at a local hospital to work with patients, and I chose neurology. I got to see all kinds of patients & that sort of changed things. I felt like many of the doctors had lost their emotion toward th patients. After seeing them, we’d talk aftwerwards about what they thought, and it seemed that their emotion was buried.

I got to see new patients, and patients with older injuries — and after that I started to look harder at research. And I got into a very special lab run by one of the forefathers of tissue engineering. That was really my first strong lab experience, where I learned how to do things differently. I was an undergrad among PhDs and postdocs, but was treated as one of the team.

Their attitude was that it might be interesting to take a naive kid and put him in a lab before he got indoctrinated with the idea that nothing could be done.

So he started looking at nature itself, with its 3 billion years of Research and Development. The lizard, for example, can regenerate just about everything. These animals regrow their limbs, spinal cord, eyes, whatever. (Slide is an image of an axolotl salamander, called the “master of regeneration.”)

How does it regrow a leg, for crying out loud? That seems impossible.

But he says that what we need starts with a biomatrix — a regeneration matrix. It needs to directly reprogram the needed tissue-specific cells to start the process. His team has actually produced this thing for humans. Regeneration Matrix is a trademarked term. And they’ve shown in the lab that human neuroprogenitors proliferate, differentiate and extend neurites when in contact with that stuff.

Say what? Neuroprogenitors means this: cells that are like the basic stuff from which the kinds of cells you find in a healthy spinal cord arise. So this is good news. In a transected rat cord, what you get with the matrix placed into the cavity is regrowth of spinal cord tissue.

In pigs, this stuff recruits oligodendrocyte precursors to the site of the injury. In human language, that means it acts like a siren to the cells that provide the wrapping/insulation to axons. And in their rat model over 4 weeks you see the rats recovering function as measured on the good old BBB model.

On the walking beam test, they end up about halfway between untreated animals and uninjured animals. They’re like ASIA D guys.

Overview. They’ve seen sensory and motor regeneration in pigs and in 3 tested spinal cord injury models in rats (contusion, resection, hemisection). When they look at what’s going on in dishes, they see

  • a 10-fold increase in neuronal and astrocyte differentiation
  • a 2-fold increase in neurites and neurite length
  • and no tumor growth.

Yikes. He’s got a slide up with about 50 tiny little images meant to show that the word “stem cell” is a generic term, like “drug.” Yes. There are lots and lots of kinds, each of which can only do one thing.

What we want is neural stem cells. That specific kind. Where do you get them? Well, that’s a problem. You don’t have any extra ones lying around in your body. So about 10 years ago they started trying to replicate what salamanders do. Axolotl is able to REPROGRAM its own cells right at the injury site to become the kind of stem cells it needs.

Okay. Remember Dolly the Sheep? She was cloned by taking a cell from the body of the original sheep, putting it into an egg, fertilizing that egg, and growing it into a sheep.

We don’t want to clone ourselves . . . we just want some neural stem cells. So what they did is directly reprogram neural stem cells. They’ve been able to make them out of blood cells, skin cells . . . whoa. And they spontaneously regenerate as neurons. They “work” in the sense that they express all the right proteins, just like regular neurons. They also by themselves spontaneously form myelin, the “insulation” we need for messages to travel between neurons.  They can form synapses.

New slide title: Human directly reprogrammed neural stem cells work better in a broken rat cord than human fetal neuroprogenitor cells — the fetal cells are at the moment considered the “gold standard” for regeneration.

They’re much safer in terms of tumor risk, too.

They’ve been tested by the Canadian National Research Council.

They’re looking now at differentiating their cells into specific lineage. (meaning,

This is technology developed over 15 yrs by 100 researchers. It’s proven in animal studies. There’s evidence of functional recovery in humans with chronic sci. This technology can be extended to other cns diseases. They’re your own cells so it’s ethical. We’re still in early stages; there’s much more work to be done.

BUT people — this is a new thing. And it’s promising as hell.

Q: What about bladder function?

A: What we’ve seen is that it doesn’t matter what your injury level is. Once you get regeneration, things begin to work.

Q: Were your animals all acute?

A: No. We couldn’t get approval to work on severe chronic models. We’re trying to work out a way to test in a different CNS issue.

Confessions of Amateur Activists

That’s what we called the presentation — it was me, Matt Rodreick, and Rob Wudlick talking about our various roles as noobs trying to figure out how to be part of the solution. I told the folks how I happened to write the new book, which is called Don’t Call It a Miracle . . . the basic story is that I’m a writer and I thought the community was lacking a basic guide to the system we’re trying to buck. The book is about the basic science, but also about the barriers to recovery, the regulatory system, the ways science gets paid for, the role of advocates, and the life/motives of scientists themselves. I tried to make a platform from which we the community can speak with authority.

Rob and Matt were all about their recent SUCCESSFUL effort to pry $1 million a year out of the MN budget for SCI research. They spent 5 years getting that done, and the good news is that they’ve made the next goal to share what they learned along the way, by way of what they’re calling the Cure Advocacy Network (CAN).

More on how to get the book and how to reach out to Matt and Rob later on. We’re in a break right now & I’m astonished to say that Naomi Kleitman just came by to ask me to sign her copy of Don’t Call It a Miracle. She’s at the Neilsen Foundation (and before that the NIH) & was one of the people I counted on to set me straight when some bit of science was confusing.

Back soon.

Sunday Morning

This day is going to start with Marilyn Smith (Executive Director of Unite2FightParalysis) doing a little welcome speech. I’m pretty sure she’s going to mention the fact that it’s been 10 years since the first little “Rally for the Cure” back in 2005.

Here she goes.

I want to welcome you to this unique conference — consumer driven, advocate driven together with top notch clinicians from around the world.

The usual housekeeping stuff .  . how to get on the internet w2w15 is the pw for the room. Where to park, how to get validated, how to use the Whova app, Thanks the sponsors and the speakers, especially Kennedy-Krieger Institute, who are also celebrating their 10th anniversary this year. Tomorrow we get to go up to visit their facility in Baltimore . . .

Names the volunteer staff who make this happen: Donna Sullivan, who spends all year trying to set up the agenda & arrange the speakers; Chris Powell, who works side by side with Donna looking at the work being produced in labs and deciding who to bring to the conference; Ginni Kent, Dave Zachs, Harvey Sihota.

More than half the people here today are first-timers. (Wow.) People are here from all over the planet. Marilyn tells them that probably in about two hours they’ll feel like they’re facing a freight train. Hey, shoutout to the blog! Yes, I’m doing this in real time and will be posting throughout the day.

The program is 60 pages long this year and includes a lot of information about current clinical trials . . .

Christopher Reeve passed away in October of 2004 (beautiful image of him up on the screen). If you were part of this club at that time, you remember how bad that sucked. He could say “cure” and “paralysis” in the same sentence in a way that nobody else could. At that time a lot of us were part of a message board called CareCure — and six of us got together to organize a rally on a lawn at the Capitol.

Talk about amateurs! We had no idea what we were doing. About 2 weeks ahead of the thing, someone asked if we had a stage permit. Um, what??? We had no clue what we were doing. And then Tricia Brooks and Michael Manganiello from the Christopher Reeve Foundation stepped in to help, and invited a bunch of people — Dana Reeve, Tom Harkin, Jim Langevin, Hillary Clinton were all there.

The next year (2006) three of us from that original six got together and decided to do it again. And that’s how this started. As I was thinking of this talk, I asked myself what we’ve accomplished . . .

The answer is, not enough.

If Chris Reeve were still with us, I believe he’d be disappointed. And yet if you think about where we were 10 years ago, a lot has changed. My son Noah was injured in 2004, and what we’ve seen since that time is dozens of recovery centers popping up in the USA and around the world. There are 32 in the USA alone, some of which are here today: Core Florida, NeuroWorks (from Utah), Project Walk Atlanta, PhysioAction from Brazil, Pushing Boundaries from Seattle, NeuroKinex from the UK, Push to Walk from New Jersey, and of course Kennedy Krieger.

Of course, exercise recovery isn’t the cure. It does, however, improve outcomes, and it’s going to be a HUGE component when there are drug/surgery interventions. We’re lucky that there are so many of these organizations, because we’re going to need them.

When I look at the 2006 program, there were zero clinical (i.e., human) trials. All experiments were on rats and mice. This year we’re going to hear about lots of them. We’re seeing more therapies being applied for chronics — 10 years ago everything was aimed at acute injuries.

Video coming up . . . it’s a photo montage from the last 10 years. I recognize so many of these people, as would anybody who’s been part of this deal.

Hopefully when we gather 10 years from now, you’ll all be walking through the door and this conference will be obsolete. (clapping)

I have a little granddaughter who’s a year or so old, and some of her first words have been MORE and FASTER . . . let’s follow that lead.

She’s introducing a panel that includes me. Back soon.

Twas the Night Before Conference

And all through the Marriott …

A zillion people in wheelchairs…

Were making a racket.

Ahem. Or something. I’m sitting in the corner of the Forest Glen room in the basement of the hotel, looking out at one of those epic Working 2 Walk scenes where the norm is neither AB nor DIS — just a lot of happy people talking a little too loud while they catch up on the news since last year.

IMG_1471

Gotta say, this hotel is CRAZY tonight — for starters, there are TWO weddings going on (think, LOUD bands), plus I think a Bat Mitzvah and another conference which seems to involve sororities. Many old friendships renewed (Hi, Maus family! Hi Jody and Ryan!, Hi, Tricia! Hi, Barry!) — where we talk about about everything from raising kids to fitbits for wheelers to who was the most outrageous teenager among us.

It’s a good night. Going to be a good conference.

10 Years After: Welcome Back

Hello, friends!

book cover
Some of us back in 2010 at the Phoenix W2W

This blog is coming to you live from Bethesda, Maryland in the USA. It’s a real-time report from the annual gathering of scientists, advocates, wheelers, caregivers, medicos, regulators, and funders. We’re looking to make paralysis a thing of the past. We’re looking to get that done as fast as humanly possible.

Buckle up. We’re not messing around.