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Federal Law Brings Hope to Individuals and Families Living with SMA, Expands Access and Research

Cure SMA Logo (PRNewsfoto/Cure SMA)

News provided by

Cure SMA

Feb 03, 2026, 17:45 ET

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WASHINGTON, Feb. 3, 2026 /PRNewswire/ -- Cure SMA today announced that key research and legislative priorities championed by the spinal muscular atrophy (SMA) community have been approved by Congress and signed into law by the President as part of the Consolidated Appropriations Act of 2026.

"These provisions are a victory for individuals and families living with SMA," said Maynard Friesz, Vice President of Policy & Advocacy at Cure SMA. "By expanding research funding opportunities, supporting rare disease innovation, and improving access, Congress has taken meaningful steps that will directly improve lives across our SMA community."

With 10,000 individuals living with SMA in the U.S., and the disease affecting approximately 1 in every 15,000 births, federal research investment and policy action can deliver meaningful impact for individuals and families impacted by SMA nationwide. At a time when scientific advances are rapidly changing what is possible for people living with SMA, these new provisions help remove barriers that can delay innovation and limit access to treatment and care.

Key provisions of the law include:

  • Increased Federal Research – SMA is now a priority research topic in the U.S. Department of Defense's Peer Reviewed Medical Research Program, opening new federal funding opportunities for researchers nationwide.
  • Extension of Rare Disease Innovation Program – The FDA's Rare Pediatric Disease Priority Review Voucher Program is extended, supporting continued investment in rare disease therapies, including SMA.
  • Improved Access to Specialized Care – The Accelerating Kids' Access to Care Act helps individuals with complex medical conditions, including SMA, navigate out-of-state care while maintaining safeguards to protect families and Medicaid programs.

Cure SMA thanks our SMA community advocates from across the country who shared their stories and championed these provisions.

To learn more about Cure SMA and its advocacy on behalf of individuals with SMA and their families, visit https://www.curesma.org/advocacy.

About Cure SMA
Cure SMA's mission is to drive research for treatments and a cure for SMA, and to support and empower everyone impacted by SMA today.

SOURCE Cure SMA

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