Congress has not yet passed a full-year Fiscal Year 2026 budget for the U.S. Department of Health and Human Services, which includes critical funding for myotonic dystrophy research supported by the National Institutes of Health. Without a full-year budget, Congress risks harmful cuts that would slow scientific progress and delay discoveries that could improve the lives of individuals and families living with myotonic dystrophy. There is a real possibility that Congress may approve a budget with reduced federal biomedical research funding or fail to pass a full-year budget at all.

This year, NIH funding has already been reduced by 2.5 billion dollars through program reductions or suspensions, with nearly 2,500 scientific grants frozen or terminated. (Source.) Myotonic dystrophy researchers report significant delays and setbacks as a result of these disruptions.

Myotonic dystrophy research is at a pivotal stage. NIH investments power the discoveries and clinical trials that thousands of individuals and families living with this complex, multi-systemic disease depend on. Any further cuts will slow scientific progress and delay future treatment options.

Please take a moment to contact your Members of Congress and urge them to pass a full-year FY2026 NIH budget that provides meaningful funding increases. Strong federal support is essential for advancing myotonic dystrophy research and improving the lives of people affected by this disease.