Along with funding spinal muscular atrophy research, Cure SMA provides thousands of families with vital family support and resources to help them live active, engaged and hopeful lives. Cure SMA is a resource for stable, unbiased support, offering understanding and resources when they are most needed.
In just the past year:
- We were contacted by over 400 newly diagnosed SMA families.
- We shipped nearly 1,300 packets of information to families affected by SMA.
- We sent 150 CDs, filled with SMA information, to families in other countries across the globe.
- We sent almost 2,500 support items to SMA families. Some of these include Newly Diagnosed Care Packages, wagons, and information for both families and healthcare providers.
- We provided 300 pieces of medical equipment to SMA families across the United States.
The Mission of Family Support
Our family support and patient care departments work with families in these and many other ways, such as:
- Supplying SMA information to all newly diagnosed families who contact us, helping each to understand and manage the disease better.
- Sending care packages of toys that have been recommended for children affected by SMA.
- Housing a shared medical equipment pool, available to families at no cost.
- Hosting the Annual SMA Conference, the world’s largest gathering of families, medical professionals, and leading researchers from around the world.
- Offering local community support through our vast volunteer network.
- Publishing care series booklets, Directions (our biannual family newsletter), and other important publications.
- Providing personal support via telephone or email.
Families affected by SMA turn to Cure SMA for information, guidance, encouragement, and most importantly, hope. We are committed to providing families the support they need for today, while we fund the research that will lead us forward to a treatment and a cure for SMA.
To contact the family support department, please email [email protected].
(Pictured above: Lily, with items from her Cure SMA family support care package.)