More than 70 chapter leaders, event organizers and board/committee members of Cure SMA gathered in Washington, D.C., on April 26 for two days of “networking, learning and advocacy.”
Cure SMA — dedicated to supporting the search for treatments and a cure for spinal muscular atrophy (SMA), as well as to supporting families living with SMA today — took their cause to Capitol Hill, where advocates discussed SMA issues with senators and members of Congress.
Among SMA’s talking points, according to a news announcement: federal funding for screening newborns for SMA, and the proposed addition of SMA to the list of diseases that newborns are routinely tested for.
Event participants came from 24 states plus the District of Columbia.
After lobbying on the Hill on April 26, participants attended Cure SMA’s Leadership Summit on April 27. The focus of that day was continuing to build up strong local Cure SMA chapters.
More than 1,100 attendees have already signed up for Cure SMA’s annual conference, to be held in Dallas in June. The conference is co-attended by children and adults with SMA and their families, and researchers working to develop therapies and a cure. Cure SMA announced that it received a record number of abstracts for the 2018 SMA Researcher Meeting, and that submissions came from 16 countries and nearly 50 institutions.
To see a video of Cure SMA’s day on Capitol Hill, click HERE.
