A key congressional committee approved fiscal year 2026 legislation that now prioritizes new federal research funding for spinal muscular atrophy (SMA).
The U.S. Senate Appropriations Committee recognized the unmet medical needs of individuals with SMA, including those from military and veteran families, by this year adding “spinal muscular atrophy” within a biomedical research program managed by the U.S. Department of Defense (DOD). Through this action, SMA is now one of a limited number of conditions eligible for research funding within a $370 million biomedical research program.
“This bipartisan action represents a significant advocacy win for the SMA community and acknowledgement by Congress that more research is needed to address the everyday living needs of adults and children with SMA,” said Kenneth Hobby, Cure SMA President and Jackie Glascock, Cure SMA Chief Scientific Officer.
“Thank you to the SMA community for their years-long advocacy in educating Congress about the unmet needs of children and adults with SMA and for urging Congress to prioritize new funding for SMA,” said Maynard Friesz, Cure SMA Vice President of Policy and Advocacy. “This major advocacy win would not have been possible without the SMA community, especially in this fiscal environment.”
In January, Cure SMA released a national report highlighting the unmet needs of individuals with SMA and SMA’s impact on military and veteran families. In February, more than 3,100 SMA community members signed a letter to Congress urging them to add SMA to this DOD research program. Throughout the spring and summer, adults with SMA and parents of children with SMA sent individualized letters to Congress and participated in meetings with congressional offices to highlight their unmet needs and their goals for new SMA research.
Cure SMA will work throughout the remainder of the year to ensure Congress finalizes this must-pass funding bill and that it includes this key SMA research provision. Thank you for your continued support and advocacy.
