Bill
Profiles 
The Gwendolyn Strong Foundation a not for profit organization dedicated to ending Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children. We formed GSF after our daughter, Gwendolyn, was diagnosed with the most severe form of the disease at six-months-old. Although she was born "perfectly" healthy after a normal pregnancy, by three-months-old her physical abilities began declining rapidly.
Fighting Spinal Muscular Atrophy: The Gwendolyn Strong Foundation
Once a month Friendship Circle profiles an organization that provides support, programming and/or funding for individuals with special needs. If you have an organization that you think we should include please contact us.The Gwendolyn Strong Foundation a not for profit organization dedicated to ending Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children. We formed GSF after our daughter, Gwendolyn, was diagnosed with the most severe form of the disease at six-months-old. Although she was born "perfectly" healthy after a normal pregnancy, by three-months-old her physical abilities began declining rapidly.
SMA is brutal. SMA is terminal. Similar to ALS/Lou Gehrig's disease, but in babies, SMA is a degenerative condition that eventually impacts the ability to walk, stand, sit, eat, breathe and even swallow. The mind and spirit are no different from that of a healthy child and are never impacted, but the body eventually fails. Children with SMA require around-the-clock medical assistance and monitoring and 50% never live to see their 1st birthday. 90% never see their 2nd.
We were stunned to learn that 1 in every 40 people are carriers of the SMA gene - most have no family history - and, although an accurate carrier screening test has been available for years, it is not currently in the standard panel of tests.
There is currently no treatment or cure, but SMA research is extremely advanced on many fronts with groundbreaking implications for not only SMA, but also spinal cord injuries, ALS/Lou Gehrig's, Parkinson's, Alzheimer's and even some forms of cancer. As witnesses to the degenerative cruelty of SMA, it is our personal and passionate mission to further awareness and accelerate research solely focused on curing this cruel disease. In just 18 months since founding GSF, we have raised nearly $750,000 for SMA research, lobbied Congress for increased SMA funding and coordination for these promising research programs, and created unique social media campaigns to increase awareness of this little known killer.
We are one of the "lucky" ones -- Gwendolyn is now a feisty three-year-old preschooler who loves horses, reading books, dancing, and driving her power chair. We've watched as her abilities continue to decline and it is beyond torture, but it makes us all the more passionately determined to change the future of SMA forever!
We truly believe that together we can end SMA -- one person and one dollar at a time!
To learn more about the Gwendolyn Strong Foundation and fighting Spinal Muscular Atrophy visit http://gwendolynstrongfoundation.org or on Facebook
