Cure SMA celebrated a day of advocacy on Capitol Hill on September 16 with more than 170 individuals with spinal muscular atrophy (SMA), their families, and SMA community partners at the 2025 Hope on the Hill reception.
Founded in 2011, Hope on the Hill was created to raise awareness of SMA in Washington, DC, and to support research funding that drives treatment breakthroughs. For the first time in its 14-year history, the event featured an in-person advocacy component. Adults with SMA and family members of children with SMA participated in more than 150 meetings with members of the U.S. House and Senate, amplifying the community’s voice at the federal level.
At the evening reception, advocates from 34 states were recognized for their collective impact—both during Hill Day and through year-round efforts. The program featured powerful community speakers and distinguished guests who highlighted SMA priorities:
- Ryan Manriquez, an adult with SMA from California, spoke about how federal policies affect people with disabilities and the role of the SMA community in breaking down barriers to work, savings, and marriage.
- Melissa Gutridge, a mother from Connecticut, and Brian Ronningen, an adult with SMA from Wisconsin, shared their personal stories on the importance of advancing federal research in SMA.
- Colonel Mark Hartell, Director of the Congressionally Directed Medical Research Program at the U.S. Army Medical Research and Development Command, discussed the Department of Defense’s commitment to advancing health care through innovative and impactful research.
- U.S. Representative Jimmy Panetta, who represents California’s 19th Congressional District, discussed his efforts to end the marriage penalty that exists in Social Security for people with disabilities and the importance of advocates telling their stories with Members of Congress.
Additional remarks were delivered by Kenneth Hobby, President of Cure SMA; Brad Nunenmaker, Vice Chair of the Cure SMA Board of Directors and an adult with SMA; and Shannon Zerzan, Board Member, mother of a teenager with SMA, and co-founder of Hope on the Hill with her husband, Greg.
The 2025 Hope on the Hill reception was made possible through the generosity of our sponsors. We extend a special thank you to this year’s Discovery Sponsor, Genentech; New Direction Sponsors, Biogen and Scholar Rock; Benefactor Sponsor, Novartis; and Hope Sponsor, Ultragenyx.
