On December 6th, Cure SMA will highlight the progress made in spinal muscular atrophy (SMA) and recognize the advocacy that helped lead to this success in a special event in our nation’s capital.
Cure SMA has hosted an annual Hope on the Hill congressional dinner and reception in Washington, D.C. since 2010 to increase awareness about SMA and to recognize policymakers and government officials for their role in helping to advance research into SMA treatments and to improve patient care and community supports. The 2022 event will feature remarks from lawmakers, including U.S. Senator Roger Wicker of Mississippi, U.S. Senator Amy Klobuchar of Minnesota, U.S. Senator Thom Tillis of North Carolina, and U.S. Representative Gus Bilirakis of Florida.
The event will also highlight the record-setting advocacy and engagement by the SMA community in 2022. During the June 2022 National Conference, individuals with SMA, their families, and other Cure SMA supporters educated Congress on the need for additional SMA research and other SMA community priorities. The effort—the largest recorded federal online action in the history of Cure SMA—resulted in congressional action urging the National Institutes of Health (NIH to continue to address the needs of individuals with SMA through additional research.
The 2022 event will be attended by 100-125 individuals and families with SMA, Cure SMA board volunteers and donors, and event sponsors, which includes Biogen, CTIA, Genentech, Novartis Gene Therapies, Scholar Rock, PhRMA, The Zerzan Family, Epirium Bio, and Verizon.