UPDATE (3/28/25)
Dear TSC community members,
We would like to provide an update on government advocacy activities after the continuing resolution (CR) passed on March 15.
As you are aware, this CR included a 57% cut to the Congressionally Directed Medical Research Program (CDMRP). Initially, we thought there would be a 57% cut across all CDMRPs, though we later learned the Defense Appropriations Committee Chairs shared a “Congressional Intent” letter that recommended funding for a portion, but not of all, of the CDMRPs. This letter was meant as a starting point of conversation and is not the final spend plan. The programs originally included were those that are specific line items in both in the House and Senate versions of the appropriations bill. The TSCRP was excluded because historically, it only appears as a line item in the House’s version of the appropriations bill. However, historically, we have been included as a named disease within the Peer Reviewed Medical Research Program in the Senate version of the appropriations bill.
There has been unclear communication between government entities. Yesterday (March 27), a preannouncement about funding was shared by CDMRP staff without a final funding plan in place. The CDMRP will hold any further announcements until there is clarity between the Defense Health Agency, and House and Senate Appropriations Committees.
We have not given up hope and have been hard at work behind the scenes with our government advocacy consultant, Mark Vieth and the Defense Health Research Consortium (a collective of other disease organizations with CDMRP programs) to do everything we can to try to restore this critical funding. If we are unable to restore a specific line item for the TSCRP, we believe and are seeking clarification that there would still be a funding instrument for TSC research through the Peer Reviewed Medical Research Program, within the CDMRP.
We will continue to keep you updated as we learn more. We will not give up fighting to reinstate this funding for FY25! As part of these efforts, restoring funding and advocating for FY26 is going to be more important than ever. FY26 Dear Colleague Letters are not yet circulating, but we anticipate them in April and will reach out to you when we know more.
Thank you for all your dedication and advocacy for the TSCRP and everything you do to fight for the TSC community every day!