On February 3rd, Congress approved and the President signed into law key research and legislative priorities that Cure SMA and individuals with spinal muscular atrophy (SMA) and their families have been advocating for over the past year.
The Consolidated Appropriations Act of 2026 includes the following provisions that will benefit children and adults with SMA and their families:
Increased Federal Research into SMA
SMA was named a priority research topic within the U.S. Department of Defense’s Peer Reviewed Medical Research Program. SMA is one of only 51 conditions eligible for research funding through this dedicated medical research program, which is managed by DOD to help develop cures and transform health for military service members, veterans, their families, and all Americans.
This action provides SMA researchers with a new federal funding opportunity to advance promising SMA research. Cure SMA launched a national advocacy campaign in February 2025 to secure SMA’s inclusion in this DOD program. This campaign was supported by SMA community advocates in all 50 states through letters, online actions, and in-person advocacy.
Extension of Rare Disease Research & Development Program
The law also extends the U.S. Food and Drug Administration’s Rare Pediatric Disease Priority Review Voucher (PRV) Program through September 30, 2029. Cure SMA supported this extension, as the PRV Program incentivizes rare disease research and development and was instrumental in the development of current SMA treatments.
Streamline Process for Accessing Specialized Care
The new law includes the Cure SMA-supported Accelerating Kids’ Access to Care Act, which will make it easier for children with complex medical conditions such as SMA to access out-of-state care. The legislation streamlines Medicaid screening and enrollment processes for out-of-state pediatric care providers while maintaining important safeguards to protect program integrity.
Cure SMA thanks the SMA community advocates from across the country who shared their stories and championed these important provisions. To learn more about Cure SMA and its advocacy agenda on behalf of individuals with SMA and their families, visit https://www.curesma.org/cure-sma-advocacy/. For questions, contact [email protected].