2019 Zane's Run
Great Valley Middle School
Welcome Alle's Personal Page
I am fundraising for Cure SMA because they are leading the way to a world without spinal muscular atrophy. Last year Joey was diagnosed with SMA Type 1, the most critical type of SMA. Fundraising helped to get him an experimental treatment to extend his life expectancy of 6-9 months old. This year the treatment was FDA approved and is now available to many more infants. Anyone who has a child can imagine how devastating it must be to hear this diagnosis for any child, let alone one you know or your own child. Joey is a friend of our family and I'm fundraising to help spread awareness and hopefully find a cure so no more families ever have to hear how limited their time with their new born child could be.
SMA is the number one genetic cause of death for infants and 1 in 50 people in the United States is a genetic carrier. 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. Cure SMA has also invested more than $80 million in research and has funded half of all the ongoing new drug programs for SMA, including Spinraza and Zolgensma, two FDA-approved therapies for SMA.
Join me by registering or donating today! Make a donation of $25 or more to 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!