Each year, Cure SMA provides thousands of families with vital support and resources to help them live active, engaged and hopeful lives.
Our programs provide tangible support for families affected by SMA, easing the difficulties of an SMA diagnosis, and showing each family that they are not alone and that there is hope. Our family support programs also help build and maintain a strong and unified community.
In the last year alone:
- 982 information packets in addition to 199 care packages were sent to families
- 238 equipment pool items were lent to families.
- 205 care binders were sent to families.
- 94 CDs of SMA information were distributed to our international families.
- 71 wagons were given to families to help better transport thier children, whether it be around the house or yard, to visit friends or family, or to get to doctors’ offices and other appointments.
- 58 condolence care packages sent to families.
- 1,502 total attendees participated in our 2016 Annual SMA Conference, including researchers.
- 1, 771 total items sent to support families in 2016.
Shaping the Future of Family Support
With the recent developments in the SMA drug pipeline, including the FDA’s approval of Spinraza, we have planned a series of educational modules to address the topics, issues and questions that will be most critical to families as we move forward. All modules will include an interactive learning opportunity, such as a webinar, along with booklets and other materials that our community can review and refer back to.
In addition to releasing these new educational materials to our community, we will also provide these to newly diagnosed families as part of our information packets, in order to ensure that our entire community receives the education and information they need to make the best decisions for thier family.
The Mission of Family Support
Families affected by SMA turn to Cure SMA for information, guidance, encouragement, and most importantly, hope. We are committed to providing families with the support they need for today while we fund research to lead us forward to a cure for SMA.
If you have any questions about our family support programs, please call 800.886.1762, or email [email protected].