Matt Roderick saying how thrilled he is that the conference has come home to his city after all the traveling to other places. Invites everybody to come and see him so he can talk your ears off about how advocacy works.
Shows an image of his own stepson’s child-drawing of himself. It’s a scary looking guy with wild hair and round glasses. Tells about a phone conversation he once had with a guy in Boston, who after talking with him on the phone for a few minutes realized … oh. You’re that guy with the weird hair. I remember you and I remember kind of dismissing you.
So Matt asks us to pay no attention to his hair, which he’d vowed not to cut until his son Gabe was better. Says Gabe told him recently nobody cares, which gets a laugh. (If you haven’t seen him, Matt has gray-brown dreadlocks that go all the way to his waist.)
Minnesota advocacy story was told at w2w last year … led to the Pennsylvania advocacy that’s now under way. Small group of people have already launched a bill modeled closely on the one passed in Minnesota.
“Fifteen minutes into our first legislative meeting, the legislator asked how much money we were getting in Minnesota. We told him $1 million. He stopped us and said we could do that in PA.” So, very happy that the story he told last year about MN success led to actual consequences.
Also going to be a meeting in WA state, but lots of work left to do. (I’m part of that and I just need to say that anybody in WA reading this, PLEASE GET HOLD OF ME) We need a team.
Okay, so Death Valley as a metaphor for getting to a cure. It’s harrowing, deadly, a desert that’s difficult to cross. How did the Conestoga wagons-to-the-west thing actually happen? Those old wagons were sponsored by people hoping to make money off them. They weren’t individual efforts.
And he says that us wanting to cross the desert is like that. We the people tend to stake our claim on one strategy or researcher. You bet on one wagon or strategy. We sponsor it and put our energy, attention, and money into the wagon. But what if there were a little “wagon city” on the edge of the valley. Imagine that building the wagon is the science. Preparing the wagon is publishing that science and getting it replicated. Once that happens, you have to map the trip — make a clinical trial design, find some investors. Then you venture out into the valley, which is doing the clinical trials.
BUT there’s a second death valley. If it ever works, how is this thing going to get to customers? To us? It’s not automatic.
So, says Matt, it’s time to stop thinking about a particular little wagon and sticking all of our hope in one wagon and instead supporting the whole race … ALL the wagons and the building of the road itself.
Talking now about criticism within our community. Wasted time and money. It’s because we don’t feel like we have much control over the wagon city … there are people yelling in support of their favorite wagon and getting mad because there are people supporting a different one.
That’s kind of what stem cell tourism looks like. Matt admits that he took Gabe to India — bet on one particular wagon.
A better strategy is to get control of the road, the train, the race itself. But picking one wagon to cross Death Valley will open up a flood of resources! Um, maybe … but what if the results are very modest? The marketplace is brutal, and if the profits have to be easy to see and big. What if the wagon fails and makes a barrier in the road?
We need to support the whole race. He has an image up that shows all the states that have funding for SCI research. There are 12, and in 2005 one source said there was $27 being spent annually. And that’s about a third of what NIH (the big elephant in the funding room) is spending each year.
Matt says that it’s not just the money. It’s that getting this done — the process of getting it done — is what builds advocates. And they’re savvy. They have relationships with researchers. They have relationships to a whole variety of stakeholders, including people in healthcare, people who make public policy, people who are engaged in other kinds of advocacy for disabled people.
Um … what about that thing called Quest for the Cure? Isn’t that what they were doing back in the 90s? Sort of. So let’s go back and get the people involved in that effort to join this new one.
We need to build a road map for the whole train, with enough connected partners and savvy voices, then we get ourselves to a place where lobbying the feds makes sense. They’re lots tougher than the state guys.
Can this work? is this dreadlocked guy crazy??? He admits that he doesn’t know. But maybe.
Maybe it can work. Maybe we can build BOTH from the top down and from the bottom up. We need all of our voices and we need some help from decision makers at the top. We need more cooperation, collaboration, and a lot less competition.
Showing an image of Gabe’s tattoo, which is a line that circles his body at the level of his injury. (C5) Moving that line down is the goal.
I didn’t do this justice! It was a lot of fun to hear and watch, with many great images of deserts and Conestoga wagons. 🙂