Annual Cure SMA Community Update Survey Ready for Your Input

Navigating the recent global health crisis, Coronavirus (COVID-19), has reinforced for us the importance of understanding what the SMA community is thinking, feeling, and experiencing. This allows us to more effectively support those impacted by SMA, both with the everyday needs you have and during greater public health challenges. Without this knowledge, we cannot advocate for more comprehensive research and care, educate regulators, payers, and industry partners, or enhance our programs to address the immediate and long-term needs most important to people living with SMA.

For the past four years, the Cure SMA Community Update Survey has collected data and information on our community’s experiences and challenges of living with SMA. Every single family and individual bring a unique perspective that, collectively, helps us adapt to the changing landscape of SMA and in the face of unforeseen public health crises. At this time—where the introduction of treatments is extending lifespan, newborn screening is leading to earlier diagnosis, and global pandemics are bringing about new questions—it is more important than ever to make your voice heard. Completing this survey is one tangible, and relatively simple, way for you to do this.

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 among our community over time. These findings not only allow Cure SMA to adapt our services and support for you, but we also share them with healthcare providers and industry partners so they can stay up-to-date on the ongoing medical challenges faced by affected individuals of at all ages and stages of SMA. Most recently, survey findings have been used in securing additional support during the COVID-19 pandemic.

As a “thank you” for your time completing this survey, everyone who participates will be entered into a drawing for the chance to receive one of 60 gifts from Cure SMA, including:

  • Apple Watch
  • Apple iPad Air
  • Nintendo Switch
  • $100 Amazon Gift card

Who can participate in the survey:

  • Individuals with SMA who have reached the age of majority. (In the U.S., the age of majority is 19 years in Alabama and Nebraska, 21 years in Puerto Rico, and 18 years in all other states. International respondents should adhere to their respective country’s laws on age of majority.)
  • 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 in order to participate.)

Please complete one (1) survey per person affected by SMA. The survey is open to both U.S. and International participants.

How to participate:

Please click on the link below and you will be directed to the survey, which should take approximately 15 minutes to complete.


The survey will close on May 13, 2020 at 11:59 p.m.

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.

Our thanks to the SMA Industry Collaboration for their support and contribution to the Cure SMA Community Update Survey.

If you have any questions on this survey, please email [email protected].

Finally, during these uncertain times we are facing, if you are in need of any SMA-related information, support, or resources related to the Coronavirus (COVID-19), please visit: and stay tuned for new support programs soon to be launched.

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