May 8, 2025
Insult to Injury: An Update on the Fed’s Spinal Cord Injury Research Program
Jason Stoffer
I wanted to take a moment and provide you with an update on our efforts to restore the Federal government’s Spinal Cord Injury Research Program (SCIRP). As many of you may know, SCIRP is part of the Department of Defense, and falls under the Congressionally Directed Medical Research Program (CDMRP) that aims to find treatments for veterans, and all U.S. citizens, suffering from SCI.
Click the image above to download our advocate one-sheeter to share with your friends, family and co-workers.
In short, SCIRP has not yet been restored for FY25, but there are glimmers of hope for its restoration in the FY26 budget.
An attempt was made by Senators Chris Coons and Angela Alsobrooks to restore funding for CDMRP to the FY24 levels, but their amendment was blocked from getting a vote on the Senate floor. We believe we have allies in Majority Senators Susan Collins (Chair of the Senate Appropriations Committee) and Lisa Murkowski. Collins convened a Senate appropriations hearing on April 30th (which can be viewed here.) That hearing highlighted bipartisan criticism of the administration's crippling of the Federal biomedical research system.
We plan to meet with Senators Collins, Murkowski and Mitch McConnel (Chair of Senate appropriations subcommittee on defense). We are also searching for constituents of Representative Ken Calvert (Palm Springs, CA) who is the defense appropriations Chair in the House. Our strategy at this point is to educate these lawmakers about the ramifications of the loss of SCI research in particular.
The meetings we’ve had with a handful of Federal legislators have thus far been favorable. Most are empathetic to our efforts, but the consensus is: “this is brand new territory and we are trying to figure out how to navigate it.”
We have convened a bi-monthly coalition meeting with leading organizations in the SCI community and have crafted a unified statement to share with advocates and law makers.
Click the image above to download our legislative one-sheeter to share with your congressional representatives
NOW, as if the loss of SCIRP wasn’t bad enough, there are new developments in the “dumpster fire” that is SCI Research in 2025. A leaked Health and Human Services (HHS) Presidential proposed budget would:
- Reduce the National Institutes of Health budget by 40%
- Eliminate the Administration for Community Living (ACL) which houses the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), which funds SCI Model System Research at centers like Craig, Sheppard, and Shirley Ryan.
If that budget is adopted it could mean an additional loss of $56 Million for SCI research. Let that sink in. With the loss of SCIRP that would be almost $100 Million dollars gone, annually. That’s more than two-thirds of the Federal funding from those agencies no longer available to support this vital research.
AND, we recently learned that two of our state research programs are facing substantial budget cuts as well: Minnesota’s program has a proposed reduction from $3M to $500K. Ohio’s program is facing a reduction from $1.5M to $750K. The Minnesota advocates are rolling up to the front lines and will be voicing their concerns at the state legislature. Ohio advocates will be mobilizing as well.
Click the image to download our MN legislative one-sheeter to share with your friends, family and Minnesota legislators.
So what does all of this mean? It means that SCI research is facing its largest threat in history. It means that the blood, sweat and tears of advocates to establish these programs, incredible progress that resulted from them, and the dedicated researchers doing the work, may disappear if we don’t fight RIGHT NOW.
This is all happening very quickly and it is a lot to defend. Here at U2FP, it is an “all hands on deck” situation as we try to strategize the best way forward with the resources at our disposal. Those resources, in all honesty, are scant. As much as it bothers me to ask for financial support, we need it now more than ever.
Our legislative advocacy is perhaps the most impactful work that we do and it has never been safe in our budget. We have NEVER received a grant for this work. We receive NONE of the $40M for research generated by our State programs. The only thing that keeps this work going is individual donations and our Team U2FP program.
Please consider becoming a monthly donor (or increasing your monthly donation), participating in Team U2FP or helping us to find an ally with the financial resources to provide us a grant for this legislative work.
In solidarity!
PS - Time is short in Minnesota and we urgently need your help right now. Please contact the key representatives listed below and share a short message about how the SCI/TBI program — and the programs it has funded, like ESTAND — have supported you or your research and improved the lives of individuals with SCI.
Here are the contacts:
Rep. Marion Rarick (R) – Co-Chair
rep.marion.rarick@house.mn.gov | 651-296-5063
Rep. Dan Wolgamott (DFL) – Co-Chair
rep.dan.wolgamott@house.mn.gov | 651-296-6612
Rep. Nathan Coulter (DFL) – Co-Vice Chair
rep.nathan.coulter@house.mn.gov | 651-296-4218
Rep. Erica Schwartz (R) – Co-Vice Chair
rep.erica.schwartz@house.mn.gov | 651-296-8634
