Myotonic dystrophy research is at an important federal funding decision point.
In 2025, proposed cuts and delays to federal biomedical research created uncertainty for scientists working to better understand DM and develop new treatments. Because patients, families, and advocates spoke up, Congress restored funding to key research programs, including the Congressionally Directed Medical Research Program (CDMRP). That outcome demonstrated something important: advocacy works!
Now Congress is beginning work on the Fiscal Year 2027 Department of Defense appropriations bill.
MDF is asking lawmakers to include $10 million in dedicated myotonic dystrophy research funding within CDMRP.
CDMRP is a competitive, peer-reviewed federal research program that supports high-impact, innovative medical research. Dedicated funding for DM would accelerate promising therapeutic development at a pivotal time and complement our continued efforts to maintain DM eligibility within the Peer Reviewed Medical Research Program (PRMRP), which has invested $23.5 million in DM research to date.
There are still no FDA-approved treatments that slow or stop disease progression. Researchers are advancing targeted genetic and RNA-based approaches designed to address the underlying cause of DM, but sustained federal investment is essential to maintain momentum.
Members of Congress decide which diseases receive dedicated research funding. Hearing directly from constituents makes a measurable difference.
Add your voice today and urge your Senators and Representative to support $10 million for DM research in FY27.
“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