Celebrating Skylar's 21st Birthday with 10 Swims at 6 Venues Covering 21 Miles
Check out this video to see how.
Families of SMA (now Cure SMA) is founded in 1984. The SMN gene is discovered one year later. This discovery provides researchers with an understanding of how to target and treat Spinal Muscular Atrophy.
Skylar is diagnosed with SMA Type 1 and given a prognosis of 2 years. At the time, his pediatrician had never heard of the disease. Families of SMA reaches out to us to provide support, resources and hope. There is only one treatment in development.
Skylar's Aunt Maggie launches the inaugural Skylar's Fight swim as part of Sharkfest San Francisco (aka Escape from Alcatraz) to raise awareness and funds for Families of SMA. Our first team consisted of 11 swimmers.
The number of swimmers, supporters and donations for Skylar's Fight continues to increase over the next two events. Families of SMA focuses their research on RNA based therapies and preclinical use of small molecules (RX's). Skylar participates in a study that helped determine the different types of SMA (I, II, III, and IV) based on the number of SMA backup genes (SMN2) he carried.
Skylar loses his fight to SMA and becomes an angel. Donations are made to Families of SMA in his memory. Six drugs move into clinical development.
Skylar's Fight is rebranded to Reach4Sky. Our Bi-annual event moves to Southern California as part of Sharkfest San Diego in 2011, 2013, 2015, and 2017. Families of SMA becomes Cure SMA in October 2014 as research moves into high gear culminating in two remarkable announcements: 1) December 2016, the FDA approves Spinraza, the first ever treatment for all types of SMA and 2) May 2019, the FDA approves Zolgensma, a gene replacement therapy (through a one time infusion) for children under 2. However, our work is not done until a Cure is found for all and there are no more SMA Angels.