Feb 28, 2024
Skin in the Game
Quinn Brett
After my spinal cord injury, I was airlifted to Craig Rehab Hospital in Colorado, where I stayed for 6 weeks as an inpatient. During my stay, I was tormented with having to lay still, paralyzed. I stared out the window with seemingly nothing but time.
My mind overcompensated. I dove into any resource I could find - online or off - about SCI treatments. It seemed we were curing rats left and right, but no cures for us humans. I felt hopeless, disappointed, confused and ill-informed.
What were all these treatments in the Ukraine, Thailand and Venezuela? Are they really injecting stem cells or is it just an expensive dupe for those desperate to walk again? If these treatments were truly viable, why wasn’t our whole community advocating for access? Wouldn’t we all be cured?
Quinn in the hospital after her fall from a mountain climbing accident on El Capitan in Yosemite National Park.
Hounding the internet, I found Unite 2 Fight Paralysis (U2FP) and latched onto their CureCast podcast, read the SCI research primer they recommended, “Don’t Call it a Miracle” by Kate Willette, and then cold-called the new Executive Director, Matthew Rodreick.
I had so many questions: Why aren’t we making any progress? Why doesn’t it seem like my new community is advocating very loudly? How can I become a part of this movement for curative therapies U2FP keeps talking so pragmatically and knowledgeably about?
Matthew spent over an hour with me on that first call. I was impressed that a busy Executive Director took this kind of time for me (I’d later learn he did it with pretty much any newly injured person or family member who reached out - that it was part of the organizational culture).
What Matthew imparted to me about U2FP in that call confirmed my instincts: we can’t sit on the sidelines waiting for the experts ‘out there’ to do the work. Instead, the SCI community has to educate ourselves on the science so that we can bring the expertise of our lived experience into the cure space.
I am now working for the very organization that provided me with the educational ‘crash course’ I needed to elevate my voice and my community's voice. Six years after that first call with Matthew, I’ve watched U2FP deliver tangible gains for our SCI community.
In particular, U2FP's Cure Advocacy Network (CAN) has delivered translatable SCI treatments to the clinic. This past October, U2FP board member Traci Fernandez (pictured below) demonstrated a sit-to-stand transfer - something she had never been able to do before - using an epidural stimulator. This intervention became clinically available as a result of the Minnesota SCI/TBI Research grant program which U2FP’s Cure Advocacy Network helped pass.
You can watch the backstory of how this program came to be from U2FP’s Annual Symposium last year, by clicking the image above.
How has U2FP been able to pass SCI Research Grant bills in 4 states over the last 8 years (with Wisconsin poised to become state #5 soon)? Largely by increasing the number of monthly donors. By building a dependable stream of monthly income, U2FP has been able to bring the voice of the SCI community into critical spaces where curative treatments are being developed or funded.
That’s why today, as U2FP’s new development director, I’m kicking off a new campaign to add 40 new monthly donors. And no, that’s not a typo in the graphic below. I’m proud to become the first new monthly donor of this campaign. So now, there’s only 39 more to go!
Above, from left: John Martinson, Jason Stoffer and Samantha Troyer at the Wisconsin Capitol. Their efforts - along with many others from the SCI community in Wisconsin - are close to paying off after years of advocacy work. Read about it here.
U2FP’s CAN organizes the SCI community to advocate, pass and fund translatable cure research through state legislation. In the last eight years, our CAN initiative has added over $34M in legislative funding to curative research, resulting in over 200 persons with a spinal cord injury having received meaningful interventions so far!
But getting grant funding for the CAN is notoriously difficult (though I’m working on it!), since it involves political lobbying. This is why we need you to become a monthly donor. For the price of a cup of coffee or a dinner out, your monthly donation will help ensure U2FP expands our Cure Advocacy Network along with our other initiatives, all of which embed the SCI community in the cure enterprise.
Paralysis is devastating. Learning to adapt is an ongoing challenge. I feel incredibly lucky to continue my baseline passions, similar to what I was doing in my athletic career, breaking barriers and establishing first ascents in unknown terrain. Spinal cord injury research is an expedition of its own kind, one that we haven’t fully surmounted…yet.
Join me and put some skin in the game. Invest in the SCI-led movement for curative therapies and help U2FP continue to collaborate with SCI advocates and SCI scientists every single day. There are no solitary heroes in this movement - it’s going to take all of us: clinicians, researchers, funders, regulators and especially those of us who live with a spinal cord injury, along with our family and friends. Let’s GO!!!
