Update on TSCRP Funding

The TSC Alliance and our grassroots volunteers across the country continue to strongly advocate for continued federal funding for tuberous sclerosis complex (TSC) research and ensure individuals and families affected by TSC have access to the resources they need. Below is an update on our current efforts and how you can help.

Update on Medicaid 

As early as this week, Congress may consider a budget that changes the way state Medicaid programs are funded, which may result in cuts and loss of coverage.

The TSC Alliance has partnered with The Arc and the National Organization for Rare Disorders (NORD) to raise awareness of the importance of Medicaid. Both organizations have created action centers and easy-to-use resources to help you share what Medicaid means to you. Please use the links below to learn more and make your voice heard! 

NORD Action Alert to Protect Medicaid: Take Action | RareAction Network.

The Arc Action Center: Share what Medicaid means to you!

FY 2025 TSCRP Update 

On March 15, Congress passed a Continuing Resolution that included a 57% cut to the Congressionally Directed Medical Research Programs (CDMRP). This cut was not made uniformly across all CDMRPs, and unfortunately resulted in no funding allocated to the TSC Research Program (TSCRP) for Fiscal Year (FY) 2025, which ends September 30, 2025.

However, with the support of our champions in the House and the Senate, tuberous sclerosis complex was added as one of the 56 qualifying topic areas under the Peer Reviewed Medical Research Program (PRMRP). $150 million has been appropriated to this program for FY 2025 and the inclusion of TSC as a topic area enables TSC researchers to apply for funding through this program. We anticipate a funding announcement from the PRMRP in the near future.

We will continue advocating to restore the TSCRP for FY26, but we need your help!

FY 2026 TSCRP Call to Action 

Dear Colleague Letters are currently circulating in the House and Senate to restore funding for the TSCRP in FY 2026.

Please email your Members of Congress and urge them to sign the bipartisan Dear Colleague Letter. We’ve provided templates below to use when emailing your Members of Congress. Find contact information for your Representative and Senators here.

It is crucial for you to reach out this week! The deadline to sign the Senate Dear Colleague Letter is May 15, 5 pm ET and the deadline to sign the House Dear Colleague Letter is May 16, at 5 pm ET.

Now, more than ever, the TSC community needs to make its voice heard to ensure the continuation of federally funded TSC research. If you have any questions, please email Katie Smith at ksmith@tscalliance.org.

Please note that the Quill links below will only work for Members of Congress.

House Template

Dear Representative XXX,

I’m writing to you today to ask you to sign the bipartisan Dear Colleague Letter sponsored by Representatives Fitzpatrick and Raskin in support of funding for the Tuberous Sclerosis Complex Research Program in FY26.

This funding is important to me because (insert your personal story)

To join this effort, please sign on via Quill. If you have any questions, please contact Tyler Rosenstein in Representative Raskin’s office at tyler.rosenstein@mail.house.gov.

Thank you for your consideration of this request.

Sincerely,

Name

City/State/Zip Code

Senate Template

Dear Senator XXX,

I’m writing to you today to ask you to sign the bipartisan Dear Colleague Letter sponsored by Senators Cramer and Heinrich in support of funding for the Tuberous Sclerosis Complex Research Program in FY26.

This funding is important to me because (insert your personal story)

To sign on, please use this Quill link. The deadline to join is COB, Thursday, May 15th. For any questions, please contact Katherine Broten (katherine_broten@heinrich.senate.gov) or Victor Perez (victor_perez@cramer.senate.gov)

Thank you for your consideration of this request.

Sincerely,

Name

City/State/Zip Code
 

Thank you! 

We are in this together and are so grateful for your support, your advocacy and your voices!