Lori Sames' Story
In March 2008 at 4 years old, our daughter Hannah, was diagnosed with a rare, terminal disease called Giant Axonal Neuropathy (GAN). We were told she would die in her teens or early twenties. There was no treatment, no organization, no research strategy and no hope. We were told it would take ten years and $10 million to even approach a treatment. We created Hannah's Hope Fund, the only 501c3 Public Charity in the world dedicated to developing a cure for GAN. In four years, over $3.2 million was raised. An international scientific team has developed a gene replacement therapy they believe will save the central nervous system for the 37 kids in the HHF network and extend their lives. This will likely be the first disease community to administer a therapeutic gene to the spinal cord. If successful, the approach could save tens of thousands of kids with Spinal Muscular Atrophy, Charcotte Marie Tooth and perhaps even five percent of Amyotrophic lateral sclerosis (ALS/Lou Gehrig's Disease) patients.