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.)
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!