Hope on the Hill event celebrates progress in SMA research, advocacy
At Cure SMA’s 13th annual Hope on the Hill event in Washington, D.C., spinal muscular atrophy (SMA) patients, their families, lawmakers, and other advocates gathered to celebrate recent progress in disease research and legislative priorities for the SMA community.
Among the speakers at the event were several members of the U.S. Congress, SMA community members, and Cure SMA president Kenneth Hobby, who discussed what’s ahead in SMA research and treatment advances, according to a Cure SMA press release.
“We are on the cusp of multiple new and improved treatment breakthroughs in the year ahead, all of which are the result of decades of research collaboration between academia and government and industry with the support of the amazing SMA community,” Hobby said.
In October 2023, Cure SMA hosted a Capitol Hill Day, where advocates gathered in Washington, D.C., to educate members of Congress about SMA and the unmet needs and priorities of the community, as well as to promote legislative priorities that would support those with the disease.
Hope on the Hill, held Nov. 19, was a chance to celebrate what’s been accomplished over the last year.
New bill to improve air travel safety, accessibility for people with disabilities
In May, an aviation bill was signed into law that included provisions for improving air travel safety and accessibility for people with disabilities who travel in a wheelchair.
U.S. representatives Sam Graves (Missouri), Pete Stauber (Minnesota), and Mark DeSaulnier (California) spoke at the event about their bipartisan efforts to make that a reality.
Lyza Weisman, an SMA patient, also spoke about how Hill Day advocacy helped move the aviation bill forward.
“Our collective education and Hill Day advocacy resulted in a new law that will get us closer to our accessible air travel goals,” Weisman said.
U.S. senators Tammy Baldwin (Wisconsin) and Shelley Moore Capito (West Virginia) spoke over video about their efforts to add provisions to funding bills for 2024 and 2025 that would support new SMA research at the National Institutes of Health (NIH).
Baldwin talked about her support for legislation to help overcome caregiving and transportation challenges for people with SMA and other disabilities.
Critical role of caregiving highlighted
“Access to caregiving represents our independence, our community living, and our ability to achieve our individual dreams,” said Vincent Pinti, who has SMA and spoke at the event about the critical role caregiving plays for patients.
Cure SMA also recognized a number of other members of Congress who have supported various other legislative priorities for the SMA community.
Keynote speaker Joni Rutter, PhD, director of the NIH National Center for Advancing Translational Sciences (NCATS), discussed the center’s work to accelerate new treatment advances.
“Our past investments and research have changed the trajectory of the disease,” said Dave Gordon, whose child died from SMA as an infant. “But our work is not done. We’ll need the continued support and partnership of the NIH, FDA, researchers, and industry to help us realize our goal of finding a cure.”
Hope on the Hill was founded by Shannon and Greg Zerzan following their son’s SMA diagnosis. Proceeds from the event support Cure SMA. The Zerzans announced that Hope on the Hill has raised more than $2 million for SMA research and support since its inaugural event in 2011.
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