Congress has recognized the unmet and new needs of individuals with SMA by including legislative language in must-pass legislation asking the National Institutes of Health (NIH) to continue research in SMA.
At the 2022 Cure SMA conference and throughout the summer, individuals with SMA and their families educated Congress about existing challenges faced by the SMA community. Through Cure SMA’s Action Center, advocates wrote their Members of Congress about the impact of current SMA treatments and the need for additional SMA research. The online campaign represented the largest federal advocacy action in the history of Cure SMA.
The SMA community’s collective efforts paid off.
Legislative provisions urging NIH to continue its successful SMA research efforts were included in separate funding bills for the NIH in the U.S. House and, most recently, in the U.S. Senate. “This action is significant for two reasons,” said Cure SMA President Kenneth Hobby. “First, it demonstrates that Congress understands that challenges remain for the SMA community, especially for adults impacted by SMA. Two, it signals to the NIH that Congress expects the NIH to address these unmet needs through additional SMA research.”
Final congressional action on the must-pass NIH funding bill is expected later this Congress. In addition, Cure SMA will announce its own grant awards later this year for new SMA research, which is being supported in part through a generous funding match by Richard and Jane Nunemaker.
A side-by-side of the SMA provision is included below. To learn more about the NIH SMA research provision or other advocacy efforts on behalf of individuals with SMA and their families, go to https://www.curesma.org/advocacy/ or reach out to [email protected].
- U.S. House Report (see page 156): https://www.congress.gov/117/crpt/hrpt403/CRPT-117hrpt403.pdf
- U.S. Senate Report (see page 156): https://www.appropriations.senate.gov/imo/media/doc/LHHSFY23REPT.pdf