Forgot to Say

The conference is of course the result of effort that goes on for many, many months. The people who organize it at u2fp are mostly volunteers; there are only 1 or 2 paid staff there, and I use the word “paid” very loosely. We’re talking fraction-of-the-poverty-level paid. So please thank them. I thank them! You guys did it again, and it was just so good to have everybody roll into our city.

The other thing I have to mention is my friends at Pushing Boundaries, who spend each and every day helping paralyzed people work whatever muscles they have working (and some they didn’t know about!). It’s another nonprofit, another labor of pure love. If you haven’t checked out their gym in Redmond, for heaven’s sake do it. You’ll be glad you did.

Special shout out to Barry Long, whose voice and presence and humor and intelligence really set the tone for what otherwise might have seemed like an overwhelming & difficult day. He has an incredible gift and I’m just so glad that he said yes when he was asked to take the stage. I’ve never seen it done better. Barry, you rock.

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What to Do after the Conference: Breakout

This is a breakout with 5 speakers, some of whom have already presented in the main ballroom. Rachelle the Paralyzed Bride is here, along with Ida Cahill and Matthew Rodreick — the other two are my spousal unit (Bruce Hanson) and Corinne Jeanmaire, who is here from the Netherlands. You already heard about the work that Rachelle, Ida, and Matthew are doing . . . Bruce is involved in trying to get a bill through the WA state legislature that will create a stable funding source for WA scientists. Corinne has a foundation that is aimed at raising money for science to help chronics recover. She’s also trying to create a plan that will foster collaboration among scientists.

Matthew is the timekeeper . . . he shows Corinne the time on a little piece of paper, trying subtly to tell her that she’s used up her 3 minutes for introduction. She looks at it, and says in her French accent that she doesn’t know what that is. He laughs and tells her it means she’s out of time. She says, “Oh, that’s not what it says in French.”

And they open things to the room, which has maybe 15 of us. This is a good turnout, gotta say, for an advocacy meeting at the very end of a very busy two days. We’re all pretty tired.

Ida says that her organization gets calls from people all over the country who want to know what they can do but want to help. They hold little fundraising events.

Matthew says there are about 15 states with a publicly funded mechanism (audience member says, “And 3 provinces in Canada!” and Matthew says “What’s Canada?” to much laughter). Sorry, Canada.

We talk a little about the issues with this approach. One is that the funding has to stay inside the state — and if there are no worthy grants inside a state, that money will go to waste. However, the money is what builds the program. In KY they’ve had a law on the books since about 1995, and the result is two very successful (in terms of research) sci centers at both their major universities. Neither of those programs would exist if that law hadn’t been passed.

Move on to discussion of what the message is supposed to be. Rachelle talks about the kind of talk she generally gives, which includes very specific negative messages about her condition. People like to listen to her, though, because she manages to do it while keeping a smile on her face. It’s a weird bind to be in, because nobody wants to hear a downer of a story — and yet the story is a downer. The fact that it’s a downer is what makes a cure necessary, for pete’s sake.

Talking about money. The NIH has an umbrella budget that’s granted to it by the US congress, but they can’t designate money to go to a particular area (like SCI). The best avenue to get money from the federal gov’t is through the DOD, which funds all kinds of human health research — their biggest category of funding, far and away, is breast cancer.

Breast cancer gets more money from the DOD than anything else they’re looking at, including TBI, which you’d think the Department of Defense would be all over. (WTF.)

Not kidding.

Canadian guest suggests that we should have a unity document that names our (the community’s) research priorities — a widely disseminated document that says here’s what the focus should be.

Rachelle suggests that a rally in DC would be very hard to do just because of logistics of travel for our community.

Matthew says we have a fractured community (no pun intended). At every legislative hearing they went to speak at, there were people in his own community present and loudly saying that this was a bad idea. Matthew’s son said publicly that he “wanted to get fixed.” And people get hostile about this because they believe that cure money will detract from money that should be spent on accessibility and care. Besides which, there are splits within the cure community over what is to be funded.

We have a bunch of small SCI foundations here in the USA — if we could just get a bunch of them to sign on to a set of research funding priorities.

We ought to build a network . . . man who has been working with United Spinal says that there are enough of us to organize a federal effort.

Okay, peeps. Time to get a roll on. Thanks for following this as it was happening!


Tricia Lazzar

She’s the Executive Director of Pushing Boundaries — which is an exercise-based therapy organization in Redmond, WA — the only one in the Pacific Northwest. When we started in 2005 we used a lot of different equipment and had only sci clients. And then we started getting people with stroke and ms and all kinds of things. And all of them were benefiting from what they were doing at PB.

What’s great is being able to work hand in hand with some of the best medically based therapy systems. The University of Washington has a terrific OT and PT program, and a lot of our clients come to us through them. She has a slide up with dozens of logos from other exercise-based therapy centers, which exist now all around the USA and the world. Lots of people are here representing those organizations, and many of them got started because they saw another one and went home and got started on their own.

Integrated therapy is what we’re going to talk about for the rest of today . . . Seattle has a resource called Bastyr University, a world class place where you can get outside the realm of western (conventional to us) medicine. Alternative medicine is any of a broad range of healing approaches; any of various systems of healing or treating disease  . . . and integrated therapy is the combination of western + alternative.

This is fairly common here on the west coast, but maybe not so much where everybody else is from. What’s always true is that great medicine is based on great science. Okay, she’s got a list up that she’s calling “short” but it has about 30 items on it, including yoga, chiropractic, pilates, tai chi, biofeedback . . . and people have reported back to her and others in her position that they’ve had results like reduction of stress, reduction of depression, and so on.

I’m asking you guys to think outside the box and consider making changes. But healthcare itself is also changing . . .

Who/what determines how healthy we are? 10% correlated to healthcare, 40% to behavior or biology, and the rest to our environment or social circumstances in which we live or have lived.

The new ACA rules require hospitals to come up with plans to reduce cost while improving health for patients. These include forming what are called Accountable Care Organizations, which ties all kinds of entities together.

She’s describing the breakouts that will be happening for the next hour or so . . .I’ll spare the distant readers.


Advocacy Award

We do this every year.

Marilyn is reading from the nomination . . . it’s a warm, articulate endorsement of this year’s recipient. He’s not just a bridge-builder. He learns, thinks, and takes action. The world needs more of him.

Wow, it’s Matthew Rodreick, who just challenged us to go home and make the world better.

He’s saying that 10 minutes ago he asked Marilyn who was going to get the award, and she wouldn’t tell him. Now he knows why.

I told my wife and a few other people that I feel sometimes uncertain about this project of mine. I’m just a dirty hippy peacenik, but whatever. I’m hoping you’ll take the challenge I offered and come see me about how it fits for you.

Thank you!


Matthew Rodreick

Marilyn is introducing Matthew, who arrived at his first w2w a few years ago, shortly after his son was injured. He’s the u2fp outreach coordinator and has begun his own foundation called GetUpStandup2Cure (gusu2cure.org)

(he’s a sweet person. Also has the most amazing dreadlocks)

Now you guys are going to find out who the dirty hippy is who’s been wandering around here. Okay, there used to be a time when I looked more like Murray (who is a about as straight-laced as you could be). Turns out that he promised his son that he wouldn’t cut his hair until the kid stood up. Silly, naive, goofy, but I promised, so there you go.

This will be my 5th conference. For some of you this will be the first one . . . I remember that it was sobering. Crap. Still so much to do. Not there yet. I want to talk to you about what to do when you go home. It’s not obvious.

He’s using this cool prezi presentation software that’s such a giant improvement over powerpoint, oh man. Check it.

He rides his bike to and from work, 11 miles along a paved path, no traffic. It’s often busy. So there’s a place where it crosses the railroad tracks . . . and so he’s thinking of this big freight train as The Science. A giant freight train that doesn’t respond at all to a guy on his bike who has to sit there and wait and watch it go by. He says that we have more capability than we imagine . . . we have the capability to move people.

We’re on our 4th year of trying to pass a bill to to get sci research funded. We’re just some people without power and money .  . have to rely on our gifts. One of mine is that I know how to make movies. I made a movie about this football player named Chris Kluwe, who humored me and helped me by spending a day in a wheelchair. I was hoping for a kind of capacity out of that experience — that I would be able to get the bill passed because of that movie.

What it did instead was draw attention to the community and begin the process of this not being just about me but about being about all of us. It took a lot of time to convince folks that this was worth doing and worth putting some time into. There are some people here from MN, and I’m so happy because they’ll go home and mobilize too. It won’t just be me, a dad who refuses to accept that his son is paralyzed, which is something I take some grief for.

So I think there’s 3 critical pieces. One is Capacity. One is Leadership. One is Vision. Sometimes people talk about how we’re trying to mobilize a community that’s been very disempowered. Not just physically, but emotionally and psychologically. I know folks who got hurt while doing something stupid — while drunk or whatever. For them there’s an extra barrier to becoming an advocate. And then there’s the logistics barrier. Lots of times people just can’t even show up. Not their fault, usually.

Before my son’s injury I managed an ER for about 10 yrs at a local hospital. I was always trying to get the structure flipped, so that the CEO was on the bottom of the food chain instead of on the top. Vision . . . it’s the ability to see both the forest and the trees. It requires some imagination. I think there’s this really interesting thing . . . you know the care vs. cure debate? I think it’s a lack of imagination. Life is a tapestry, so whatever happened yesterday gets woven into today, and today into tomorrow. It’s a ridiculous notion to say that there’s a tension between them.

Image of his son singing in his rock band as a c5 quad.

My proposition to you is that I want to build a grassroots network. Working 2 Walk is a great conference . . . but there’s an opportunity that hasn’t been answered. What does u2fp do about that? My idea is that I want to replicate my own experience with other people. Showing an image from one of my favorite movies, How to Survive a Plague. (Please watch! It’s on Netflix, and it’s the story of a community that got to work and saved itself.)

His invitation is to pick one of 4 things: Public Policy, Fundraising, Awareness-raising Event/Campaign, Researcher Connection. This is the challenge.

We can build capacity together. Come see me. Let’s meet as a group, virtually. I’ll provide guidance, together with some people who have already committed to making this happen. I think we can do this and get from a local level to a national level. We can use the bike path and get ourselves into a position where we can influence that freight train.

Come talk to me, please.


Reggie Edgerton Breakout

It was all based on decades of work from multiple labs, not just ours. One of the most important set of experiments were done in Moscow in the 60s and 70s. They put an electrode into the brains of animals and gave it just a tonic dose of juice. And then on treadmills the animals began to step . . . these were animals that had had their cerebral cortexes removed.

How important is location? All the variables are important. Realize that what we’ve seen so far is just the opening of a door. We’re at the model T stage in terms of the technology, and we know it can be much better.

So far we haven’t been able to get complete, full weight-bearing independent stepping in our subjects. Fine tuning the technology is going to be important . . . there are an infinite number of variables to control, and remember that we’ve spent a year with our subjects. The Cal Tech engineers are going to be what makes this possible for more and more people.

People don’t realize how significant this neuromodulation is.

Conversation about the wrongness of telling people they can’t move. Forget it! It’s just a false message — and yet you’re not going to get voluntary control without making an effort. The fact that our four subjects could perform movement based on sound and images means that their brains have re-wired themselves.

Gregoire Courtine used Swiss chocolate to get his rats to desire walking — it was his way of creating “voluntary” response.

Question about changing the shape and size of the electrode array. We don’t have any idea what the best configuration is — this is a new technology. We have lots of animal experiments to do before we understand this. There are so many options that we have to be careful not to get carried away and put everything in there.

The Big Idea next 36 patients will be using the same electrode array that was used on the first four.

Question about autonomic responses. This was another happy surprise for us. We were pretty skeptical about even talking about it, but the guys were saying it was happening. All these physiological systems are highly coordinated.  . . once you get a person standing, their physiology changes. It’s all connected. Your locomotion is connected to your bladder . . . there’s film of this rat and you can see his gait changing depending on whether he’s getting to pee or not. In rats you can stimulate on cue and get the rat to void.

Can this be shared with other practitioners so they can use this as an exercise methodology? I’m at a really frustrated state now because so many doors have opened and we want to see things done correctly and not too fast so that things don’t work. One thing that I really emphasize is that rehab is really important. You have to get insurance companies to recognize this.

What would the downside be for getting one of these stimulators put in? Reggie says, “do you know a good neurosurgeon?” Laughter, but really . . . aren’t lots of people thinking of having this done? What is the reason not to?

My thinking now is that the autonomic system might be low-hanging fruit.

We’ve studied 6 cervical patients with weak transcutaneous stim for a few weeks, then added a serotonergic type drug for a few weeks, and at each stage they’ve improved. We’ve also implanted to subjects epidurally. We wanted to know if we could stimulate the cervical cord just like we did the lumbar cord. People used to think that you had to have the central pattern generator, but that’s not true. We’re seeing the same kinds of results cervically. And we’re in the 2nd year of a 5 year program to understand that.

Question about the optimal strength of stimulation . . . depends on the individual, but we start just above the lowest threshold and then try to use the least possible stimulation. One scientist stimulated at 20% below threshold and then quantified the amount of movement of the rats in their cage, they were moving 5 times more than the rats without stimulation. We don’t want to induce the movements, we want to enable them.

Do you think we’ll be able to do this transcutaneous only? So that people don’t have to have epidural surgery? We think it will vary, and we think it will vary over time.

How should someone like me — who is ASIA D — think about this? People asked me why I wanted to start with completes, and I said offhandedly “because incompletes would be a piece of cake.”

omg.

My frustration was picked up on by NIH. Where do we go from here? There’s so many ways to go from here? I told them, you’d better pay attention to what’s happening here because if you don’t there will be a lot of angry patients. The director called me and asked, “What can we do?” I was so stunned I didn’t have a good answer. We’re having a workshop on November 15th. We have all this stuff do and all of it is going to cost a lot of money . . .where do we start? What’s our strategy? We’re getting together the NSF, multiple institutes from the NIH, SCI organizations, the US Army, DARPA . . . shouldn’t we have some strategic plan to address these problems?

What’s the anticipated timeline for FDA approval on the devices? Nick from NRT is leading our commercial effort. For the transcutaneous, once we get the resources we can do that in two years. For the epidural track, we think that’s a five-year deal. This is the first time we’ve been in a situation where we really think we know what to do. 

One channel is: what can we do with the present technology? My team is focused on the next generation, not on what we can do with this. The Big Idea of 36 patients is going to be measuring all kinds of things, but while that’s ongoing we’re going to be looking ahead.

What I would like is for this to become a Manhattan Project. The smartest best people you could get were on it. That’s what we need to do. That takes a lot of money.

Are you financially constrained right now? We could start pretty rapidly with $5 million. Are you looking for philanthropic funds, partners? Crowd funding is a possibility . . . we’re going to get that started pretty soon. That’s for the development of the transcutaneous device.

Are there venture capitalists? No checks yet, but potential.

How can we get behind this?

Nick gets up. Nick Terrafranca, Neurorecovery Technologies. We started this effort about 4 years ago, moving this effort off campus. The first step was to pretect all the intellectual property. We have the rights for the exclusive development of this technology. The next step is really expensive.

Getting an implant to market costs $120 million.

Getting the transcutaneous to market can help offset the cost of the $120 million, so that’s what we’re trying to do. The transcutaneous itself is $5. That’s what we need. We need $2 million to development for the implantable, and another $70 to get it to market.

So about a year and a half ago we went out and started raising money. That put us into the business world, you land on show me the money. What’s the ROI. What’s the size of the market. We’re in the process of raising money, but there’s not much there for medical devices. What peopel are doing is putting money into social media. What scares them is the FDA pathway. We’ve slowly knocked down all these barriers.

We own the patents for both method and application. It’s a family of about 15 patents.

Are you working with others, like stroke, ALS, etc? We have experiments with other models, but no conclusive results right now. We actually think that the brain is interfering with the physiology of the cord.

What’s the diff between the device now used by the 4 guys and what you’re building? Sure. the new system will have a feedback loop so that you don’t have to constantly stop it and change parameters to use it.

The money . . . we’ve been in conversations with VCs, high net worth people, angel investors. Someone wants to know why these people are not forking over the dough.

Well, FDA. That will be slow, and investors don’t like slow. Implantable, nobody wants to touch it. Too long. They all say get to the clinical trials and then talk to us. We’re in what entrepreneurs call the valley of death. The next clinical milestone can be done in 8 months, and they want to wait for that before they commit.

Rob Summers is now doing 100 situps a day with weight on his shoulders . . . one of the guys who had a lot of spasticity learned to stand the quickest. But the effects of stimulation varies from subject to subject, and (a woman in the room is saying that) one of the guys has gotten worse spasticity when the stim is turned off. None of the guys take baclofen.

And we thank him for 40 years of work.

“Well, it’s been fun.”


Reggie Edgerton

You might have to use a hook to get me off the stage here. That’s okay, I’mused to it

I am one of 8 owners of a comp

Major points:

  1. understand the role of automaticity in sensory-motor interactions
  2. recognize how amplification provides a mechanism to re-engage those networks of automaticity
  3. understand how re-engagement of spinal networks enables re-learning more effectively via training

What we’re doing has been put in the category of miracles, but that’s absolutely the wrong word. There’s not any ONE thing that we should track and forget about everything else. For each patient, condition, person, one intervention might be better than another. We need to develop them all. If you call something that has evolved over a 40-year period a miracle, then okay.

About 7 or 8 years ago we got to a point where we realized that there was a real possibility of using the residual circuitry in the lower cord to take advantage of automaticity. We didn’t know how much we could get out of it . . . but we thought we might be ready to work with humans. Everything was pointing in the direction that the spinal cord of humans isn’t that different from that of all other species. It’s a project that’s hundreds of millions of years old. And because we’ve all evolved in a 1G environment, it makes sense that just getting up and standing and walking will have a major effect on multiple systems.

To relearn, there must be re-engagement of the circuits. This can be accomplished pharmacologically and via electrical neuromodulation when combined with training.

What we’re doing is changing the physiological state of the spinal cord. We want to make it more likely to engage the circuitry. We’ve been doing this with drugs and with various kinds of stimulation, including epidural, which has gotten a lot of attention lately. What a lot of people don’t know is that when you add drugs, the two things work synergistically together very well.

So what’s automaticity in movement? It’s not thinking about the details of the movement you want to make. Your brain is generally not engaged in directing your movements.

He’s got a spinalized rat up on the screen that was given a dose of strichnine. It couldn’t walk on the treadmill before the dose. It’s motoring along just fine afterward in this video. We started working with cats, and it took us five years to get this working in rats. Sorry it took so long, but that’s what happened.

The rat’s legs are getting no input from the rat’s brains. It can walk forwards and backwards and sideways. Oh my god, hilarious — they turn the rat harness sideways so we’re watching its legs do sidestepping while its face looks out at us. The weirdness of sci science, I swear to god.

Where’s the intelligence in the spinal cord? In the interneurons. He’s showing a set of videos of a guy with an intact cord lying on his side with some equipment attached to his legs and feet. The equipment provides stimulation of various kinds and measures what happens. He’s been told not to step, but there are certain inputs that make his legs “walk.”

So, they asked. Do we have enough information to get standing or stepping in a human with a complete injury? We had a meeting, we got funding. We had a hunch that it might work, but we didn’t know. We decided that the present technology would be good enough fro proof of principle. We implanted that technology into four young men, and all of them regained voluntary control.

All of them also got some return of autonomic functions like bowel, bladder, sex, temperature regulation.

What shocked us was the return of voluntary control. Our subjects #2,3 and 4 were motor and sensory complete chronics. According to our old theories, a damaged nerve was dead. These men should not have been able to move their feet and legs if that were true. There have to be surviving axons in order for this to happen. These men can even control their movements based on visual information — without any sensory input through their feet — they can look at a sine wave on a screen and time their movements to the rise and fall of the curve.

What’s going on? There’s some residual capacity, sort of hiding like a submarine under the surface. And the application of a specific amount of electrical stimulation will lift that submarine up above the surface where it can reach the level needed to cause functional return.

I’m goin’ to his breakout.