Advocacy Update - FY2025 Funding for Myotonic Dystrophy Research

Published on Thu, 06/20/2024

Dear MDF Advocacy Leaders,

The House Appropriations Committee released their fiscal year (FY) 2025 Department of Defense report, and they did not fund any new disease specific Congressionally Directed Medical Research Program (CDMRP) initiatives including our request for $10 million for myotonic dystrophy research. There is still a possibility that the Senate Appropriations Committee will support our CDMRP request when they release their FY25 report in July. Our CDMRP request needs to be included in at least one of these congressional reports to be included in the final FY25 budget that will be approved after the November presidential elections.

There is good news to share! Senator Robert Casey (D-PA) informed MDF that he again supported our PRMRP funding eligibility request. His support means it is highly likely the Senate Appropriations Committee will make DM research eligible as part of PRMRP for the 8th year in a row. To date, PRMRP has funded over $24 million in new DM research.

Most successful advocacy campaigns to secure CDMRP funding take at least two years. Thanks to MDF’s efforts, which include securing Senate passage of the International DM Day resolution, maintaining a presence on Capitol Hill, making over 100 congressional visits during last year’s Annual Conference Advocacy Day, and sending over 2,730 emails to Congress this year, our Senators and Representatives are now more aware than ever about DM and our community. Because of your hard work, 16 Senators and Representatives signed our letter of support for CDMRP funding. We hope you are proud of these collective accomplishments and motivated to continue as part of our growing advocacy movement. Together, we are a strong and united voice for increased federal funding for DM research.

As the Senate moves forward with their FY25 report, we remain in close contact with Senate offices urging support for our funding requests. We will provide updates as we learn more about the Senate report. Thank you again for all your hard work and support for these efforts.

Click here to view the Advocacy page for additional information on MDF's advocacy plans!