SMA Community Progress & Advocacy Featured at Cure SMA Hope on the Hill Event

Congressional leaders and key partners, supporters, and members of the spinal muscular atrophy (SMA) community celebrated SMA achievements and advocacy at Cure SMA’s 11th Annual Hope on the Hill Congressional Event.

Hope on the Hill is an annual event to increase awareness about SMA and recognize policymakers and other key partners for helping to advance research into SMA treatments and improve patient care and community supports for children and adults with SMA and their families.

2022 Hope on the Hill Event Recap

The 2022 event featured in-person remarks from co-chairs of the Congressional Rare Disease Caucus, U.S. Senator Roger Wicker of Mississippi, U.S. Senator Amy Klobuchar of Minnesota, and U.S. Representative Gus Bilirakis of Florida. Each spoke about their role in helping to accelerate research, development, and approval of treatments and cures for SMA and other rare diseases and expanding newborn screening. Currently, 48 states screen for SMA, covering 98 percent of all U.S. newborns. U.S. Senator Thom Tillis of North Carolina presented over video about breaking down barriers to access to life-changing treatments.

The 2022 Hope on the Hill event 2022 event also highlighted the year-long advocacy and engagement by the SMA community. A record number of individuals and families with SMA participated in meetings, took legislative action, and educated their elected leaders in 2022 about SMA and the needs of the SMA community.

The collective advocacy of the SMA community led to greater awareness and legislative action, including a successful effort for additional SMA research at the National Institutes of Health. Hope on the Hill event founders, Shannon and Greg Zerzan, who are parents of a teenager with SMA, presented an advocacy award at the 2022 event to Cure SMA Board Member Kelly Cole Brown for her advocacy outreach for the event and her long-time support of the SMA community.

The 2022 event, which was held on December 6, 2022, at the Willard Hotel in Washington, D.C., was sponsored by Biogen, CTIA, Genentech, Novartis Gene Therapies, Scholar Rock, PhRMA, The Zerzan Family, Epirium Bio, and Verizon.

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