Note: some of you may have received a version of this letter in the mail last week.
I’m writing this letter from the Wisconsin capitol in Madison. It is still early November. I’m here with our CAN advocates to make a final push to pass our $3M SCI Research Grant bill this session. By the time you read this letter, we’ll all know whether or not we succeeded (see my post script below).
Why am I sharing this uncertain moment with you? Because it exemplifies two important pillars of how U2FP works: proximity and tension. These are our guiding principles, our means and ends. Let me explain.
We’re at the capitol to bring the voice of our community into proximity with the power of policy. Legislators make policy and policy determines how things work or don’t work. Our presence in their offices - our proximity - creates a tension that challenges them to pause, listen, and (hopefully) set policy priorities that align with ours.
When we pass this bill, it will give our community a measure of power. And whether it’s this week or next year, that power will come in the form of deeper proximity and better tension. We’ll put the people with this injury on an advisory board with the scientists who study it (proximity), which will create some healthy and rigorous discussions (tension). And as we’ve seen in the four states where we’ve passed legislation, this proximity-tension combo will push the research enterprise towards better, faster outcomes for the SCI community. Our evidence? Over $30M in legislative appropriations resulting in more than 200 meaningful interventions to date.
This proximity-tension strategy is the blueprint for all of our work. Our Annual Symposium features top scientists sharing the stage with SCI advocates and community members. Our Lab Rats program places people with an injury as consultants in research labs. Our CureCast podcast brings scientists and advocates into deeper conversation with one another. And our Headline Patrol series provides needed context on important SCI news that occasionally ruffles the PR machine’s feathers.
We’re a small shop doing big things. And they are working - thanks to your support. Join U2FP by making a year-end donation and/or becoming a monthly donor. Then, tell your friends, family & colleagues about our work.
PS - Unfortunately our Wisconsin bill did not pass by the end of session in late November. The silver lining (sort of) is that we are in the middle of the biennium for establishing new laws and appropriations. This means that we will pick right up where we left off:
- Our bill remains under consideration in the Joint Finance Committee.
- Our authors (Rep. Tittl and Sen. Wanggaard) are still committed to getting it passed.
- We are just two steps away from passage with 1. a vote in Joint Finance and then 2. vote on the floor of the legislature for approval
- We already have support from the Governor and expect him to sign once we get through 1 and 2.
- We are already planning a trip to the Capitol in mid December to get on legislators' radar before the next session begins in January.
- Stay tuned ‘cause we’ll need your voices again soon