For the past seven 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.
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.
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 receive a $25 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.)
- 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:
Please email [email protected] to receive an email link to participate.
Deadline to Complete:
The survey will close on Thursday, May 2, 2024 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].
