March 14, 2025 – Washington, DC – The Muscular Dystrophy Association (MDA) is incredibly disappointed by provisions passed by Congress this week within the Full-Year Continuing Appropriations and Extensions Act. Included within this legislation is a nearly 60 percent cut to the Department of Defense's Congressional-Directed Medical Research Program (CDMRP) that provides $40 million in ALS research funding and $10 million in Duchenne muscular dystrophy research funding as well as research funding for myotonic dystrophy and mitochondrial diseases. The National Institutes of Health, the world’s largest source of funding for neuromuscular disease outside of MDA, will also lose over $250 million in funding for the remainder of the fiscal year. Combined, these cuts will have a devastating impact on the advancement of both basic and cutting-edge research into potential therapies for neuromuscular conditions.

This legislation may also jeopardize our community's access to education, housing, and social security benefits. The legislation compromises the Department of Education's TRIO programs that provide support services to students with disabilities from middle school to postbaccalaureate programs and critical rental assistance programs for people with disabilities at the Department of Housing and Urban Development. The legislation also caps administrative expenses for the already-understaffed Social Security Administration, threatening to result in longer wait times, closures of field offices, and even longer backlogs for benefits for those with neuromuscular diseases.

MDA wrote to Congressional leadership this week asking for these provisions to be removed. Nonetheless, the provisions were still included within the passed bill. We are disappointed that Congress has chosen to move forward with these damaging provisions, and MDA will work to mitigate any harmful impacts these provisions may have on our community.