The 13th annual Hope on the Hill event, hosted by Cure SMA in Washington, D.C., brought together individuals with spinal muscular atrophy (SMA), their families, lawmakers, and advocates to highlight recent advancements in SMA research and legislative efforts supporting the community.
Speakers at the event included members of Congress, SMA advocates, and Cure SMA president Kenneth Hobby, who shared insights into the future of SMA treatments, as noted in a press release.
“We are approaching significant breakthroughs in treatment options, built on decades of collaboration among academic institutions, government agencies, industry leaders, and the dedicated SMA community,” Hobby stated.
Earlier in October 2023, Cure SMA organized a Capitol Hill Day to inform Congress about SMA-related challenges and advocate for policies to address community needs.
The Nov. 19 Hope on the Hill event provided an opportunity to reflect on achievements from the past year.
New Legislation Aims to Improve Air Travel for Individuals with Disabilities
In May, an aviation bill was enacted that includes measures to enhance air travel safety and accessibility for individuals using wheelchairs.
Representatives Sam Graves (Missouri), Pete Stauber (Minnesota), and Mark DeSaulnier (California) spoke about their bipartisan work to support this legislation.
SMA advocate Lyza Weisman shared how advocacy during Hill Day contributed to the bill’s progress.
“Our shared efforts during Hill Day helped bring about a new law that will advance our goal of accessible air travel,” Weisman remarked.
Senators Tammy Baldwin (Wisconsin) and Shelley Moore Capito (West Virginia) addressed the audience through video messages, highlighting their push for additional funding in 2024 and 2025 for SMA research at the National Institutes of Health (NIH).
Baldwin also emphasized her backing of initiatives aimed at addressing caregiving and transportation challenges faced by individuals with SMA and other disabilities.
Importance of Caregiving in the SMA Community
“Access to caregiving represents independence, inclusion in community life, and the ability to pursue personal aspirations,” said Vincent Pinti, an SMA advocate, who spoke about the significance of caregiving for patients.
Cure SMA acknowledged several members of Congress for their support of legislative initiatives benefiting the SMA community.
Keynote speaker Joni Rutter, PhD, director of the NIH National Center for Advancing Translational Sciences (NCATS), discussed efforts to accelerate treatment developments.
“Our previous investments in research have shifted the course of this disease,” said Dave Gordon, whose infant child passed away from SMA. “However, there is more to accomplish. Continued collaboration among the NIH, FDA, researchers, and industry will be essential to achieving the ultimate goal of finding a cure.”
Founders Reflect on Hope on the Hill’s Impact
Hope on the Hill was established by Shannon and Greg Zerzan after their son was diagnosed with SMA. Proceeds from the event benefit Cure SMA. The Zerzans announced that since its launch in 2011, Hope on the Hill has raised over $2 million to support SMA research and community programs.