Cure SMA completed a week of in-person lobbying on Capitol Hill to highlight the air travel experiences and recommendations of individuals with spinal muscular atrophy (SMA) and their families. 

This year, Congress must act on legislation related to the future of aviation in the United States. Cure SMA is working with other national disability organizations to help educate Members of Congress about the air travel challenges faced by individuals with disabilities, particularly those who fly with a power wheelchair or other mobility device. 

In February, Cure SMA released its Good but mostly Bad and Ugly of Air Travel for People with SMA report that featured direct travel experiences of individuals and families with SMA as well as short- and long-term recommendations to Congress to make air travel safer and more accessible for passengers with SMA. Cure SMA emailed the report to every Member of Congress. This week, Cure SMA met with congressional staff of key committee members responsible for drafting the air travel legislation. In the meetings, Cure SMA highlighted local stories included in its air travel report and urged Congress to support the SMA community’s recommendations for better training, greater enforcement and transparency related to disability complaints, and accessible aircraft standards to prepare for the goal of allowing wheelchair users to remain in their chairs as their aircraft seat. 

The Congressional offices that Cure SMA met with included U.S. Representative Tim Burchett of Tennessee, U.S. Representative Steve Cohen of Tennessee, U.S. Representative Mark DeSaulnier of California, U.S. Senator Tammy Duckworth of Illinois, U.S. Senator Deb Fischer of Nebraska, U.S. Jerry Moran of Kansas, U.S. Representative Pete Stauber of Minnesota, U.S. Senator Kyrsten Sinema of Arizona, U.S. Representative Greg Stanton of Arizona, U.S. Representative Dina Titus of Nevada, U.S. Senator Raphael Warnock of Georgia, U.S. Senator Roger Wicker of Mississippi, and U.S. Senator Todd Young of Indiana.