Community Update Survey

Every individual with spinal muscular atrophy (SMA) and their families bring a unique perspective that collectively help us drive further progress and adapt to the changing landscape of SMA.

About the Survey

For the past six years, the Cure SMA Community Update Survey has collected data and information on our SMA community’s experiences and daily challenges. Our top priority is to represent the voice from the whole community so we can drive research and care to meet needs of everyone impacted by SMA. Completing this survey is one tangible, and relatively simple, way for you to make your voice heard. 

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.


Every piece of data collected allows us to track changes in the attitudes, feelings, and actions of the SMA community over time. 

Results from the Community Update Survey are also used to inform and develop of Cure SMA initiatives supporting clinical trials and care. Most recently, the results were included in the Critical Path Innovation Meeting package. This meeting—held virtually in the summer of 2020—enhanced the U.S. Food and Drug Administration’s understanding of the most significant unaddressed needs for treating children and adults with SMA. This included data on decreasing hospitalization rates across all SMA types (Figure 1), an increase in the proportion of individuals with SMA Type I reporting to sit without support, and treatment updates over the past several years.

Frequently Asked Questions

The survey will open in April and close six weeks later.

Cure SMA will email a survey link to all eligible individuals in the Cure SMA membership database. If you are eligible and have not received an email, please check your spam inbox or contact the Cure SMA survey team at [email protected].

Everyone who completes a survey will be entered into a drawing to win a Hotel & Conference Registration package to the Annual Cure SMA Conference, a gift card, and many other prizes! Winners will be notified by June 30th, 2022.

All personal information and individual responses will be kept confidential.

Please feel reach out to the Cure SMA survey team at [email protected].


Belter L, Jarecki J, Reyna SP, et al. Journal Neuromuscular Dis. 2021;8(1):109-123. doi:10.3233/JND-200563

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Belter L, Cruz R, Jarecki J. Orphanet J Rare Dis. 2020 Aug 24;15(1):217. doi: 10.1186/s13023-020-01498-2

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