This week, the unmet health and everyday living needs of adults with spinal muscular atrophy (SMA) took center stage in Washington, DC, in an event organized by Cure SMA.
Adults with SMA from across the country participated in the September 27-28 event to discuss the significant challenges and barriers they face that impact their health and limit their independence.
The two-day event included a focus group discussion where adults with SMA spoke in depth about their experiences with caregiving, housing, financial security, and healthcare access. They also shared their goals and suggested solutions for breaking down the physical and systemic barriers they face in day-to-day life. On the second day, participants met with their congressional offices on Capitol Hill to share these challenges and ideas for promoting health and greater independence.
Cure SMA organized the event to better understand the challenges and goals facing adults with SMA, who represent the largest segment of the U.S. SMA population.
The planning for the greater independence activities was made possible through the generous support of Cure SMA's Presenting Sponsors, Genentech, Scholar Rock, and Biogen, and Gold Sponsor, Ultragenyx.
