I'm walking a 5k to raise money to fund Gene Therapy, which will help to save my Charleston and others like him. Will you please sponsor me?
via Crowdrise 2 years ago
My one and only grandchild, Charleston, was born with a genetic neuromuscular disease called Spinal Muscular Atrophy. I am participating in this walk in honor of him.
GETTY OWL FOUNDATION wrote -
Kate's pregnancy was flawless. A healthy baby girl named Getty was brought into the world on March 25, 2010. At the age of 4 months Getty was diagnosed with Spinal Muscular Atrophy, a neuromucular disease that slowly robs the body of muscle and ultimately compromises swallowing and breathing.
There is currently no treatment or cure for SMA, the #1 genetic killer of young children, but THERE IS HOPE! The National Institute of health has declared SMA the disease closest to treatment of more than 600 neurological disorders.
1 in 6,000 births are to an SMA child
1 in 40 are carriers of SMA
A simple blood test can indicate if you are a carrier
All money raised will be benefitting the gene therapy program through Dr. Kaspar at Nationwide Children's Hosptial in Columbus, Ohio. GETTY OWL FOUNDATION believes in the program. We believe there is hope!
Team Getty Runners/Walkers was formed by Morgan Saunders, a director of GETTY OWL FOUNDATION to help find a cure. Each Team Getty RunnerWalker will be pariticating in one of two events to help raise money.
California International Marathon: December 4, 2011
Getty Owl Run/Walk: February 26, 2012
Our fundraising goal is $10,000! We can do it, our babies deserve it!