Cure SMA Launches Third Annual Community Survey to Address Important Issues in SMA Treatment

For the past several years, we’ve been working to collect data and information on our community’s experiences, goals, hopes, and challenges. We know that the voice of our community is powerful. By sharing our stories, we can communicate our priorities to the FDA and regulators, provide insight into daily life with SMA and the ongoing medical challenges, and help ensure favorable insurance coverage for the new treatments that have come forward, and that we expect to come forward in the future.

For the third year in a row, we are launching a community update survey covering a number of areas that are relevant to the real-world experiences of living with SMA. We are thankful to the 1,000 of you that have completed our surveys in years past and invite you to participate again. At this very critical time, we need to make sure we are communicating the unmet needs of families living with SMA to payers, regulators and industry partners.

With several recent instances of exciting news in SMA drug development, many of you have asked us how you can participate in the process. Completing this survey is one tangible and relatively simple way for you to make a measurable impact.

As a thank you for your time in completing this survey, everyone who participates will be entered into a drawing for a trip to the 2019 Annual SMA Conference in Disneyland, as well as other thank you gifts. We will be giving away the following:

  • Twelve hotel and registration packages for the 2019 Annual SMA Conference. These packages include registration for two adults and two children, and three nights at the Disneyland Hotel
  • Ten Amazon Echo Plus
  • Five Apple iPads
  • Ten $100 Gift Cards

Our thanks to the Industry Collaboration (IC) for their support and funding of the SMA community survey. The members of the SMA Industry Collaboration are Astellas, AveXis, Inc. a Novartis company, Biogen, Genentech/Roche Pharmaceuticals, Scholar Rock and Cytokinetics Inc.

Who can participate in the survey:

  • Individuals with SMA who have reached the age of majority (The age of majority is 19 in Alabama and Nebraska, 21 in Puerto Rico, and 18 in all other states)
  • Caregivers of individuals with SMA (all ages and types), including those who cared for an individual who has since passed away

Please complete one survey per person affected by SMA. The survey is open to both US and international participants.

How to participate:

Please use the link below and you will be directed to the survey. The survey should take approximately 15 minutes to complete.

Take the survey 


The survey will close on Tuesday, April 30th.

Please take a few minutes to complete this survey, so that we can continue advocating for the issues that matter most to our community.

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

Cure SMA

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