2018 Northern California Chapter Walk-n-Roll
Kennedy Grove Regional Recreational Area
Team Live RhysStrong
Thank you for visiting our page and taking the time to learn more about how you can help those with Spinal Muscular Atrophy!
SMA is the number one genetic cause of death for infants, and approximately 1 in every 50 individuals is a genetic carrier for SMA. Our son, Rhys, was diagnosed with the most severe type, Type 1, in August 2013. He was with us for 55 beautiful days.
There is now great reason for hope however there is more work to do. We have the first-ever approved treatment that targets the underlying genetics of SMA. We know what we need to do to develop and deliver effective therapies. And we’re on the verge of further breakthroughs that will continue to change the course of SMA for everyone affected—from infants to adults—and eventually lead to a cure.
Cure SMA is a national non-profit organization that is very involved in working with pharmaceutical companies to develop new treatments for Spinal Muscular Atrophy and help bring them through FDA approval. They’ve already invested over $62 million in research and have funded over half of the ongoing drug programs.
They also provide vital support for families living with SMA, improving their quality of life today. And every year they host the largest SMA conference in the world, bringing families together with the leading SMA researchers.
Thank you again! Not only will your donation fund vital research and family support, it will also provide hope to the entire SMA community.