I am fundraising for Cure SMA because they are leading the way to a world without spinal muscular atrophy. SMA is the number one genetic cause of death for infants and 1 in 50 people in the United States is a genetic carrier.
Our grandson Micah is now 4 1/2 years old and was one of the 100 infants who participated in the clinical trial of Spinraza. He is our hero! Cure SMA has invested more than $75 million in research and has funded half of all the ongoing new drug programs for SMA, including Spinraza, the first-ever FDA approved therapy for SMA. Thanks to Spinraza and the diligent care he receives from his parents, nurses and nanny, Micah is doing well. He loves his pool therapy and receives speech and language therapy along with physical and occupational therapy. Because of Cure SMA and their advocacy support, SMA was added to the Recommended Uniform Screening Panel for newborns at the federal level by the Director of Health and Human Services in 2017. I'm hopeful that all 50 states will soon recommend newborn screening for SMA so that treatment can be started immediately if necessary.
SMA impacts the lives of thousands of people and Cure SMA is an irreplaceable resource. By providing services like care packages for newly diagnosed families, teens, and adults, local Summit of Strength programs, an equipment pool, and the Annual SMA Conference - Cure SMA supports the community as they navigate life with SMA.
Join me by registering or donating today! Your generous donation will help support Cure SMA so they can keep providing these important programs and services for the community.
Thank you for joining me in the fight against SMA!
On behalf of Micah, thank you very much.