Last year presented the us with unique challenges, some we are still managing today. However, it has also reinforced the importance of understanding what the SMA community is thinking, feeling, and experiencing in their day-to-day. 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 immediate and long-term needs of people with SMA.

For the past five 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 healthcare.

Additionally, results from the Community Update Survey have been 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 both an increase in the ability of Type 1 patients to sit and a decrease in hepatizations across all SMA types, along with treatment updates from over the past several years.

Completing this survey is one tangible, and relatively simple, way for you to make your voice heard. 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 attitudes, feelings, and actions of the SMA community over time.

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 25 gifts from Cure SMA, including:

  • Attendance to the Chapter and Leadership Meeting (flight and hotel included)
  • Attendance to the Hope on the Hill Meeting in Washington, DC (flight and hotel included)
  • Nintendo Switch
  • $100 or $500 e-Gift card

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. 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 to participate.)

Please complete one (1) survey per person with 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.

Deadline to Complete:

The survey will close on Monday, May 24, 2021 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.

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].