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!

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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.


Marilyn

Reminds us that the twitter tag is #w2wseattle.

Points to the event survey on each table . . . because this is a community-based event, it matters that people fill out the form and get it back to them. (This reminds me that you readers out in the world might have feedback for the organizers; if so, put it in the comments, or email me).

They’re also looking for donations, no surprise. Got a few bucks? There’s a donate button on their page. u2fp is a very, very low overhead organization, but they do have a few expenses.

And Barry Long rolls up to emcee the morning events.

First speaker this morning will be Wise Young.


Don’t Call It a Miracle

So, taking a quick break here while the first breakouts happen. Sorry if you were dying for a report from one of them. While I’m down, I’ll share the text that I planned to say to the room when Marilyn and Peter Wilderotter introduced the new book.

Miracle Cover (1)

So, here’s what happened. Last year at the end of working 2 walk in Boston, Jennifer Longdon and I were hanging out in the hotel bar.

What a shock, I know!

And we were noodling about what else could be done . . . we’re both writers by trade, and so of course we started thinking BOOK! (If you’re a hammer, everything looks like a nail. If you’re me or Jen, everything looks like a book idea. 🙂 )

Seriously. There’s no book that gathers up all the stuff an advocate ought to be fluent in. There are a zillion websites, and a dozen or so that are really good . . . but the internet is like a maze. There comes a moment when you say, “I know I read that somewhere . . . “ and it all starts to run together.

So, Book Idea: a sort of Spinal Cord Injury Research for Dummies! Those books work because they focus on the salient things. They have illustrations right where you need them. They make use of the space on the page to help highlight things that matter. If they’re thoughtfully done, they can save a ton of time for the person who just wants to understand one thing.

So that was the idea. And Jen helped me pitch it to the kind people at the Reeve Foundation, and those kind people said, “You know what, the community does need one of those.”

I spent most of the last 3 months doing interviews, writing, revising, and preparing to do more and more of all that. The result is the Sneak Preview you have in your hands — the first section of what will be a whole book sometime early next year. The first section is, as you’ll see, about the cord itself. What are its component parts called, how does each one work, how do they work together — that sort of thing.

Still to come will be similar sections that take apart the money scene: where exactly does funding come from? Who decides how to dole it out, and on what grounds? What limits the amounts granted? There will be sections on how regulation works, and what role investors play, and what it’s like to run a research center or a lab, or to be a post doc student trying to get a permanent job.

This is the question I ask everybody I interview: WHAT DO YOU WISH ADVOCATES KNEW?

The value of the book is in collecting all those answers and seeing where they lead us in terms of strategies.

Winston Churchill said that 80% of success is showing up.

I don’t know about you, but I AM DEAD SICK OF 80%. I WANT THE NEXT 20.

It’s obvious to everybody who has been following the science for the last 10 years that things have changed. Not fast enough. I don’t want to be standing here 10 years from now, saying, “Gosh, if only we’d figured out how to get organized!”

Let’s get organized. It won’t be a miracle. Don’t call it a miracle when determined people educate themselves and make something happen! That’s not a miracle, that’s how it’s supposed to work. Miracles are magic — they’re effortless. We are not going to find the cure without effort. A lot of it. It pisses me off when people suggest that the recovery my husband got was a miracle. Please! Do they have any idea how much work, how much pain and frustration, how much money was involved? Or that it was only possible in the first place because he had a sufficient number of surviving pathways? Don’t call it a miracle. We have work to do, and lots of it.

Stay tuned.


Ida Cahill

Whoa, that was a fast break. Managed to get 3 bites of banana muffin into my mouth.

Marilyn is bring up the emcee for the rest of the day — my pal Barry Long.

Thanks for being here & welcome to Seattle — so you know, this is blue Friday. We have this football team that won some game or other last year. We’re still feeling it.

Just recently I was driving my wife’s car and I got a ticket for parking in a dis spot. I went to city hall to get the ticket taken care of . . . I gave her my dis tag and she looked at it and said, “Well, your disability expires in March.” (laughter) My wife is going to be so happy to hear that!

He’s talking now about how Tricia from Pushing Boundaries helped to bring this conference to Seattle, and how glad we all are to have you.

Ida Cahill is the president and CEO of Conquer Paralysis Now, which is a project of the Sam Schmidt Foundation. Comes with a long resume in SCI research.

She speaks: I’m from the New Jersey area, Philadelphia Eagle territory . . . so congratulations. We’d like to have one of those games! I’m so happy to be here and talk about a journey that our foundation took a number of years ago. Some people here were in the room from day one, including Keith Tansey and Reggie Edgerton and Wise Young. We couldn’t have done any of this without their encouragement.

We used to be called the Sam Schmidt Foundation, but we changed our name to reflect what it is we’re doing. I have to give credit to Sam for that . . . it was his idea. Sam’s a former Indy 500 race car driver. He’s a c-3-4-5. His family was told to find him a nursing home. ha ha.

He has an Indy team that has won the championship five times. He’s part owner of a lift company called Brawn. And so on. Forget the nursing home. In response to those who say stop dreaming and face reality, I say you have it backwards. Keep dreaming and make reality.

Facts and figures are up. 5.6 million live with paralysis in the USA. 1.3 million people in the USA have a SCI, 62% of them have incomes of $25k or less.

So . . . what to do about speeding up the research. She’s talking about a book called Purple Cow. It’s a thing that gets your attention. So they went looking for their own Purple Cow. And they started thinking about competitions. In 1714 the British solved the question of what longitude is with a prize. Napoleon solved the problem of food storage with a prize. In 1927 Charles Lindbergh won $25,000 for crossing the Atlantic. In 2004 there was a $10,000,000 prize to launch a 3 person spacecraft to 100 kilometers above the earth’s surface.

So we went there. We went to researchers all over the world and asked these questions: waht are the current market failures? what breakthroughs are needed? what is the biggest challenge? And we brought together researchres 3 years ago and forced them to answer these questions with one word.

And we decided out of that exercise to offer a competition. The goal was to foster collaboration within the field, foster collaboration outside the area of expertise, and speed the pace of research.

The challenge we designed was broken into 3 stages, each one building on the last. I’m here to tell you that we’re awarding the stage 1 grants today.

The stage 1 grants will total $4 million. All aimed at chronic injuries. No research aimed at acutes.

The areas are translation, being out of the box, being able to reach and grasp. There will also be 72 trial and error prizes. The plan here is to prevent the loss of time, money and effort by allowing people to share their “failure” with one another. She’s quoting Edison, who tried 2000 filaments before he found the one that worked.

They’ve identified areas of mentorship, all of which have to do with translation: FDA Process, things like that. The scientific advisory committee includes Hideyuki Okano, Dalton Dietrich, Shawn Hochman, Amin Curt, and others. It’s an impressive list.

She’s showing us a long list of people who have been part of designing this program.

The 2nd stage will be models: animal, human

The 3rd will be a 10 million dollar prize to be awarded to a team for having reached the goals they’ve named.

Question: How are you publicizing? What can we do to help?

Answer: We have a team called Innocentive . . . the media is now focused on ebola, but we appreciate all your help spreading the word in any way you can. What we’re doing is right for us. We want everybody else to keep doing what they’re doing — the Neilsen Foundation, the Reeve Foundation — we all have our areas.

Question: When will there be a formal document that we can look at to find exact requirements.

Answer: They’re in lawyer’s hands. We want approval by November so we can start giving out money by next year.

YAY!!!


Gusu2cure.org

This is where you find the video that Marilyn showed this morning. Good stuff to share with the lucky know-nothing-about-sci world . . . seriously.