Since 2017, the Cure SMA Community Update Survey has collected data and information on the SMA community’s experiences and unmet needs. Every single individual with SMA and their families bring a unique perspective that, collectively, helps us adapt to the changing landscape of SMA. Data from the survey also informs Cure SMA’s advocacy agenda and has been featured in 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 healthcare.
How the SMA Community's Survey Responses Drive Change:
The unmet needs data we collected through past Community Update Surveys were instrumental in our recent advocacy win to highlight the need for new SMA research at the National Institutes of Health (NIH). We directly cited survey data highlighting SMA community unmet needs in Cure SMA testimony to Congress and the NIH. In addition to survey data, SMA community quotes collected through Cure SMA surveys are often incorporated into advocacy statements, most recently related to new SMA research, to further emphasize SMA community needs and goals with key stakeholders. Knowing our community’s needs allows us to better serve you—whether it be advocating for comprehensive research, educating regulators, payers, and industry partners to improve care, or enhancing our support programs to address the immediate and long-term needs of people with SMA.
Completing this survey is one tangible, and relatively simple, way for you to contribute to the SMA community. Whether this is your first time participating or you have participated in this survey before, every piece of data collected allows us to track changes in the population over time.
As a “thank you” for your time completing this survey, everyone who participates will receive a monetary incentive.
Who Can Participate:
- Individuals with SMA who have reached the age of majority. (In the U.S., the age of majority is 18 years, except for Alabama and Nebraska, where it is 19 years, and Puerto Rico, where it is 21 years of age.)
- Caregivers of individuals with SMA (all ages and types), including those who cared for an individual who has since passed away. (Please note that caregivers must also have reached the age of majority to participate.)
Please complete one (1) survey per person with SMA. The survey is open to U.S. participants only.
How to Participate:
If you have not received an email with a personalized survey link to participate in the Annual Community Update Survey (be sure to check your spam inbox!), please click here or scan the QR code below to request a survey link be emailed to you.
Deadline to Complete:
The survey will close on Monday, May 19, 2025 at 11:59 p.m. (CT)
Please take a few minutes to complete this survey, so we can continue advocating for issues and offering support that matters most to our whole community.
Funding for this research was provided by the Cure SMA Industry Collaboration.
About the Cure SMA Industry Collaboration
The Cure SMA Industry Collaboration (SMA-IC) was established in 2016 to leverage the experience, expertise, and resources of pharmaceutical and biotechnology companies, as well as other nonprofit organizations involved in the development of spinal muscular atrophy (SMA) therapeutics to more effectively address a range of scientific, clinical, and regulatory challenges.
If you have any questions on this survey, please email [email protected].