2025 was a challenging year for myotonic dystrophy (DM) research funding. While Myotonic Dystrophy Foundation (MDF) advocates successfully secured U.S. Senate support for DM research funding eligibility for the 9th year in a row through the Peer Reviewed Medical Research Program (PRMRP)—which has funded $23.5 million in DM research to date—federal funding cuts, delays, and disruptions impacted research efforts to develop treatments and move us closer to a cure.

Now, we need your help to protect and increase federal funding for DM research.

MDF is calling on the DM community to come together and urge their Senators and Representatives to support $10 million in new, dedicated myotonic dystrophy research funding within the Congressionally Directed Medical Research Program (CDMRP) as part of the soon-to-be-considered Fiscal Year 2027 Department of Defense spending bill. This request is in addition to our efforts to secure Senate support for our 10th year of PRMRP research eligibility.

Together, we can ensure DM research remains a national priority.

Here’s How You Can Make a Difference

• Make Your Voice Heard: Email Congress for Rare Disease Day

  Join MDF Advocates from across the U.S. by emailing Congress to support our request for $10 million in dedicated DM research funding.

  Use the MDF Advocacy Center, which includes a draft message you can send to your U.S. Senators and Representatives. We encourage you to personalize your message by adding a few sentences about your personal experience with DM and the challenges our community faces. Your story helps lawmakers understand why this funding matters.

  Click here to contact your representatives! >>>
   

• Participate in the MDF CDMRP Advocacy Campaign Launch Webinar
  Friday, March 13th at 12 PM Pacific / 3 PM Eastern

  Meet the MDF advocacy leadership team, including State Advocacy Captains from across the country, and learn how you can educate Congress about DM and build support for our federal funding request. During this session, advocates will learn how:

  • State Advocacy Captains and volunteer advocates can request and lead virtual meetings with congressional staff and effectively advocate for our CDMRP request. MDF advocates will begin leading these meetings the week of March 16th through April 10th.
  • Volunteer advocates can use the MDF Advocacy Center to contact Senators and Representatives and recruit friends and family to join our campaign.
  • Social media outreach can increase awareness and build congressional support for our CDMRP advocacy efforts.
     

• Be Part of MDF’s “Four Weeks of Power Advocacy”

  Following the March Webinar, State Advocacy Captains will begin requesting and leading meetings with the two U.S. Senate offices in their state and the U.S. Representatives who serve their communities. These meetings will Typically held with congressional staff responsible for defense funding.
   

  The goal of these meetings is to urge Members of Congress to sign our annual bipartisan House and Senate CDMRP funding letters of support and to send direct letters of support to the Appropriations Committees.
   

  Experienced State Advocacy Captains will support new advocates who want to participate. MDF will also assist volunteers interested in becoming State Advocacy Captains and organizing meetings in their states. We provide preparation, guidance, and follow-up support to help secure congressional backing.
   

Take Action in 2026

2026 represents an opportunity to build new congressional allies and strengthen support for DM research.

In early 2025, the President’s budget proposed a 40% cut to the National Institutes of Health biomedical research budget, and Congress reduced CDMRP and PRMRP research funding by 57%. The Fiscal Year 2026 recently passed by Congress included an overall increase in NIH funding and fully restored the CDMRP and PRMRP cuts from the previous year.

When research funding was at risk, patient advocates from across the country responded with clarity, persistence, and purpose. Congress listened, and critical federal investment in biomedical research was protected.

By raising our voices together, we help ensure that myotonic dystrophy research continues to move forward and remains a national priority.

“This is a critical moment for myotonic dystrophy research. When DM advocates speak clearly and consistently, Congress listens and progress follows. Sustained federal investment is essential to protect and expand DM research. Please join us in urging Congress to support dedicated federal funding so we can accelerate new treatments and move closer to a cure.”

— Chuck Hunt
National Advocacy Committee Member & Support Group Facilitator