Traveled from California to Washington, DC last weekend to present our team’s spinal cord injury research at the Unite 2 Fight Paralysis Science & Advocacy Symposium, then spent a full day on Capitol Hill this Tuesday alongside dozens of people living with paralysis, clinicians, engineers, and advocates from across the country.
We met with many congressional offices to do two things:
First, express gratitude.
Last year, the Spinal Cord Injury Research Program (SCIRP) was completely eliminated. This year, Congress restored $33M of the previous $40M funding which is a critical step forward.
Second, make the case for what comes next.
SCIRP is the only federal program dedicated to advancing clinical trials for spinal cord injury recovery. Experts shared the long-term health realities and societal costs of SCI, alongside a very modest ask: $50M to allow recovery science to scale.
Neuromodulation, robotics, and regenerative therapies are no longer theoretical. They are entering real clinical phases but progress depends on stable investment.
Spinal cord injury disproportionately affects veterans, and lifetime care costs can reach millions per individual. Advancing functional recovery isn’t just compassionate policy, it’s responsible policy.
One thing that makes SCIRP unique is accountability: people living with spinal cord injury help review the science itself. Lived experience helps ensure research remains focused on meaningful outcomes, something still missing in many traditional NIH funding pathways.
Georgia’s ecosystem including @georgiatech , @shepherdcenter , and the broader Atlanta innovation community is positioned to help lead the next phase of translational SCI research and deliver real return on federal investment.
If you ever have the opportunity to participate in an Advocacy Day on Capitol Hill, do it. Science moves faster when patients, researchers, and policymakers sit at the same table.
Grateful to stand with this community pushing recovery forward.
#U2FP #SCIResearch #SCIRP #SpinalCordInjury #Advocacy
In this episode of Curecast, Matthew Rodreick and Quinn Brett sit down with award winning hip-hop artist Brother Ali, who shares roots in Minnesota with Quinn. The conversation traces his journey from Minneapolis to Istanbul, reflecting on cultural identity, disability, and the power of community. He discusses the challenges and perspectives that come with living with albinism, the importance of art in expressing personal experiences, and the need for informed hope in the face of adversity. The conversation emphasizes the value of communication, the complexities of community, and the shared human experience of loss and resilience.
Link in bio‼️
#scirecovery #sci #scirehabilitation #sciresearch #sciadvocacy
Donate at u2fp.org 💜
U2FP has led the charge, coordinating a consortium of SCI organizations to fight back and work towards expanding functional recovery research. The drain on federal research dollars have added even more gravity to our upcoming Symposium, where we’ve planned a third day to Roll on the Capital and kick off our campaign for a National SCI Research Funding bill.
We hope you’ll join us in Washington, D.C. to raise our collective voice. But for now, it’s worth considering how far you’ve helped us come. Your support has helped us:
- respond to SCIRP cuts by directly lobbying federal legislators
- recruit the largest number of wheelers ever to the Twin Cities Marathon (the first marathon to allow e-assist wheelers, thanks to our advocacy efforts!)
- preserve $5M in the MN SCI/TBI research grant program from proposed cuts.
I like to make noise.
It’s a family disposition likely amplified by being born and raised in Philadelphia. But over the past 15 years my propensity for making noise has become a mission after my son, Gabriel suffered a cervical spinal cord injury, or SCI. His injury left him with quadriplegia, the loss of movement and sensation over about 75% of his body from the chest down. And in spite of years of aggressive rehab his injury is permanent.
So I’ve become a noisy advocate for researching meaningful treatments for SCI to alter that permanence.
It started with leading the effort to pass a bill in Minnesota that created a $6 million research grant program for SCI and traumatic brain injury, or TBI. We designed this program to give us noisy folk in the SCI community a voice in deciding what research matters to our community and providing the incentives to move discoveries to human unmet need.
Since then, I took over the leadership of Unite 2 Fight Paralysis, a national SCI advocacy organization. We’ve passed three more bills modeled after the Minnesota bill in Washington State, Ohio and Pennslyvania. These bills have delivered over $40 million to this area of research, following the model we began in Minnesota. We are currently working to pass another $5 million program in Wisconsin because it’s working like we thought it would.
We’ve funded multiple clinical trials — testing scientific discoveries in humans — and we’ve seen over 200 people living with SCI return lost functions like movement, bladder, bowel, sexual function and a host of other complications that come from this devastating injury.
After all of this success, we woke up to the news a few months ago that the current administration, with the help of Congress, has eliminated $40 million from federally funded SCI research for this year alone. And we are expecting further cuts that will amount to many millions more and a devastating loss of scientific momentum.
Link in bio‼️
#scifunding #scirecovery #sciadvocacy #sciresearch #scirehabilitation
