Cure SMA — the advocacy, research and support organization for people living with spinal muscular atrophy — is calling for participants for its annual Community Update Survey.
In an April 4 announcement, the organization said, “For the past seven years, the Cure SMA Community Update Survey has collected data and information on the SMA community’s experiences and daily challenges. Every single individual with SMA and their families bring a unique perspective that, collectively, help us adapt to the changing landscape of SMA.
“Data from the survey also informs Cure SMA’s advocacy agenda and has been featured in state fact sheets, legislative support statements, and educational outreach to federal and state leaders to showcase the priorities and needs of the SMA community related to newborn screening, employment, transportation, community living, and health care.”
Cure SMA is seeking input from adults with SMA, as well as from caregivers of people of any age who have SMA. Caregivers of people with SMA who have passed away are also encouraged to participate.
Participants can send an email to [email protected] to ask for an email link to access the survey. Qualified participants will receive a gift card for completing the survey.
The survey is open through May 2, 2024.
