Since 2017, 3,200 people have shared their experiences and unmet needs through the Cure SMA Community Update Survey.
The Community Update Survey is an annual online questionnaire Cure SMA uses to collect perspectives and experiences of the SMA community over time.
Every individual with SMA and their families bring a unique perspective that, collectively, help us adapt to the changing landscape of SMA.
Data from the community update survey has been featured in the annual Cure SMA State of SMA report, congressional hearings, supported SMA treatment approvals and broad access, and educated the community on the unmet needs of adults living with SMA.
Knowing our community’s needs allows us to better serve you by
- advocating for comprehensive research
- educating regulators, payers, and industry partners to improve care
- enhancing our support programs to address 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, your responses help shape how we understand—and respond to—the evolving needs of the SMA community.
As a 'thank you' from Cure SMA, everyone who participates in the 10th Annual Community Update Survey will receive monetary compensation for their time.
Who Can Participate:
This survey has been created specifically for individuals who have a diagnosis of 5q SMA and currently reside in the United States or a U.S. territory.
- Primary caregivers of an individual with SMA may join this survey if both the caregiver and the individual for whom, they care currently reside in the United States.
- Individuals with SMA may participate in this survey if they have reached the age of majority under the laws of the state where they live (19 years in Alabama and Nebraska, 21 years in Puerto Rico, and 18 years in all other states).
Please complete one (1) survey per person with SMA.
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 on the link below to request a survey link be emailed to you.
2026 Community Update Survey Request Form
Deadline to Complete:
The survey will close on Monday, May 15, 2026 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.
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.
Funding for this research was provided by the Cure SMA Industry Collaboration.
If you have any questions on this survey, please email [email protected].