Two high-ranking Administration officials and several Members of Congress from key congressional committees participated in Cure SMA’s November 29th Hope on the Hill dinner and reception, an annual Washington, D.C. event that raises awareness about spinal muscular atrophy (SMA) with key government officials. The 2023 event highlighted key SMA community advocacy priorities, including accessible air travel, SMA research, and access to caregiving and healthcare.
U.S. Transportation Secretary Pete Buttigieg, U.S. Representative Dina Titus of Nevada, and U.S. Representative Greg Stanton of Arizona highlighted the SMA community’s role in educating and advocating for accessible air travel for people with disabilities, including individuals with SMA who utilize a power wheelchair. Sec. Buttigieg pointed to DOT’s work to make air travel safer and more accessible for passengers with disabilities. “As Cure SMA works toward a cure, this community ought to have the ability to travel safely and with dignity, and the world ought to be able to benefit fully from the contributions of the talented members of this community,” he said in a video statement. Rep. Titus and Rep. Stanton attended in person and spoke about their successful efforts to include key disability provisions from their Air Carrier Access Amendments Act and Access and Dignity for All People Who Travel Act in the House-passed aviation legislation. Representatives Titus and Stanton both serve on the U.S. House Transportation Committee that oversees U.S. aviation.
National Institute of Neurological Disorders & Strokes (NINDS) Director Dr. Walter Koroshetz and U.S. Representative Debbie Dingell of Michigan recognized the healthcare challenges facing the SMA community and their work to improve access and breakdown healthcare barriers. Dr. Koroshetz spoke about how past NINDS research helped lead to current SMA treatments and highlighted current NINDS-supported research, including projects underway from members of Cure SMA’s Scientific Advisory Board, to help address unmet needs of the SMA community. Rep. Dingell spoke about her work to improve access to healthcare, especially around addressing the caregiving crisis in this country. Adults with SMA and families of children with SMA rank in-home caregiving as one of its top advocacy priorities. Rep. Dingell serves on the U.S. House Energy and Commerce Committee that oversee Medicaid and healthcare in the U.S.
The 2023 Hope on the Hill event also featured Community Spotlight presentations from Carolyn Barrett, an adult with SMA from Massachusetts who spoke about Cure SMA advocacy around everyday living issues, including accessible air travel; Doug McCullough, an adult with SMA from New Jersey who spoke about the need for SMA research; and Shannon and Greg Zerzan, co-founders of the Hope on the Hill event and parents of a teenage child with SMA who spoke about their family’s journey with SMA and involvement with Cure SMA.
The event was attended by individuals and families with SMA, SMA researchers and healthcare providers, Cure SMA Board members and staff, and sponsors, including CTIA, Genentech, and Novartis Gene Therapies. Since its founding in 2011, Hope on the Hill has raised more than $1.9 million to fund SMA research, advocacy, and support programs.
