Thank you to the individuals with spinal muscular atrophy (SMA), their family members, and other supporters who helped advocate for SMA community priorities in 2025.
As the year comes to a close, we want to recognize the SMA community for all you did to raise awareness about SMA and advocate for policies that promote independence and break down barriers. Together, we accomplished the following:
Educated Congress and Stakeholders About SMA Community Priorities & Unmet Needs
Throughout the year, members of the SMA community advocated for policies important to individuals with SMA and their families, from SMA research and healthcare, to transportation, education, caregiving, and financial independence.
- 150 SMA community members visited Capitol Hill during Cure SMA’s 2025 Hill Day to meet directly with their congressional offices.
- 4,536 SMA community advocates signed letters, participated in advocacy campaigns, or completed advocacy surveys in 2025 in support of SMA community advocacy goals.
- Cure SMA submitted 361 letters, statements, and testimony to Congress and other stakeholders in support of the SMA community’s advocacy agenda. In addition, Cure SMA updated public and private payers on the state of SMA, including ongoing unmet needs.
Secured Legislative Wins in Support of SMA Community Priorities
Thanks to the SMA community’s advocacy and education efforts, Congress finalized or made progress on top SMA community legislative priorities in 2025.
- Congress approved and the President signed into law extensions of three ABLE account provisions that will make it easier for individuals with SMA to save for their future while maintaining access to essential benefits.
- The U.S. Senate Appropriations Committee added "spinal muscular atrophy" as a research priority within a biomedical research program managed by the U.S. Department of Defense. This action was the result of Cure SMA’s year-long advocacy campaign to educate Congress about the unmet needs of individuals with SMA.
- The U.S. House Appropriations Committee included a provision in the National Institutes of Health’s funding bill for the upcoming fiscal year to prioritize SMA research at the NIH.
- The U.S. House of Representatives approved legislation to further incentivize research and development of treatments and cures for rare diseases.
Met Directly with Members of Congress and Administration Officials
SMA community members met directly with Members of Congress, and Cure SMA hosted Members of Congress and Administration officials at Cure SMA events in 2025.
- Congressman Jimmy Panetta of California and Colonel Mark Hartell of the U.S. Army Medical Research and Development Command attended and provided remarks at Cure SMA’s 2025 Hope on the Hill reception in Washington, DC.
- Congressman Troy A. Carter, Sr., of Louisiana attended and provided remarks at Cure SMA’s Summit of Strength event in New Orleans.
- SMA community advocates met and took photos alongside Members of Congress, including Sen. Marsha Blackburn of Tennessee, Sen. Susan Collins of Maine, Sen. John Fetterman of Pennsylvania, Sen. Bill Hagerty of Tennessee, Sen. Bernie Moreno of Ohio, Sen. Bernie Sanders of Vermont, Rep. John James of Michigan, Rep. Morgan McGarvey of Kentucky, Rep. Kim Schrier of Washington, and Rep. Derek Tran of California.
Launched a State & Local Advocacy Toolkit
Cure SMA launched a new State and Local Advocacy Toolkit to help individuals and families in the SMA community advocate effectively at the state and local levels. The online toolkit includes state fact sheets and issue-specific resources to support advocacy on priorities such as rare disease representation, paid family caregiving, and improving accessibility in parking, playgrounds, and bathrooms.
Thank You – You Made a Difference
Thank you to everyone who advocated with and for individuals with SMA and their families. SMA community advocates can stay engaged through the following Cure SMA resources:
- To educate your lawmakers about Cure SMA priorities, visit the Cure SMA Advocacy Action Center.
- To stay informed about Cure SMA advocacy efforts on behalf of the SMA community, visit the Cure SMA Advocacy Blog and News Posts.
- To view Cure SMA letters and statements supporting SMA community priorities, visit Cure SMA Advocacy Activities.