Cure SMA Launches Community Survey to Address Urgent and 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.

That is why we’re launching a community update survey covering a number of areas that are relevants to the real-world experiences of living with SMA. We are encouraging every family in our community to complete this survey. At this very critical time, we need to make certain that regulators, payers and industry partners understand the impact of SMA, and create solutions that will address the areas most important to us.

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 drawing for a trip to the 2017 Annual SMA Conference is Disney World, as well as other thank you gifts. We will be giving away the following.

  • Seven travel, hotel and registration packages for the 2017 Annual SMA Conference. These packages include registration for two adults and two children, three nights at the Disney World Contemporary Hotel, and a travel allowance to cover airfare or car travel to Orlando.
  • Three hotel and registration packages for the 2017 Annual SMA Conference. These packages include registration for two adults and two children, and three nights at the Disney World Contemporary Hotel.
  • Fifteen $100 Disney gift cards (redeemable at Disney World during the conference, or for Disney merchandise in store or online).

Our thanks to Biogen, the presenting sponsor of the 2017 Annual SMA Conference, for thier generous support of these thank you gifts.

Who Can Participate in the Survey

  • Individuals with SMA who have reached the age of majority. (In the US, the age of majority is 19 in Alabama and Nebraska, 21 in Puerto Rico, and 18 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 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 appoximately 15 minutes to complete.

Take the survey


The survey will close on Wednesday, March 15.

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

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

Take the survey

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