On March 24, 2008, just after Hannah Sames turned 4, she was diagnosed with Giant Axonal Neuropathy (GAN), a rare and deadly genetic disorder for which there is no cure or treatment. GAN slowly takes away the ability to walk, use hands, speak and swallow, and is terminal. Hannah';s Hope Fund (HHF) is a family and friend driven 501c Public Charity dedicated to funding research for a treatment and cure for this horrible disorder.
Five months after Hannah';s diagnosis, HHF brought an international team of research scientists together for the first ever symposium on GAN. This symposium led to a GAN gene therapy project funded entirely by HHF. Currently, our team of scientists are working to determine therapeutic doses of gene expression. Once this is determined we will be ready to conduct the safety studies required by the FDA to begin a trial. Our goal is to begin the trial in Feb. of 2012, however, this will depend on how quickly the FDA will allow us to move. Time is precious...Hannah will be 7 in March, there is so much hope for her future & all GAN children. Please join our mission and help us achieve our goal of saving precious lives.
***NEW this year***
Join our 6-week training program and get ready for the race! The program, which will meet on Thursdays from Aug. 11th through Sept. 15th, will be led by local running coaches.
A $150 minimum donation through the sale of Hope Flags is required to join the team. (Fee includes race entry).