Mission: HHF is the only organization in the world dedicated to finding a cure for Giant Axonal Neuropathy (GAN). GAN renders it's victims quadriplegics, dependent on feeding and breathing tubes and typically die in their mid 20's. Before HHF there was no hope and we are months away from stopping the progression
Results: we have done in 4 years and 3M what we were told originally would take 10 yrs and 10M. Have aligned with other Rare disease communities and will have efficacy in helping find a cure for many.
Target demographics: patients with GIANT AXONAL NEUROPATHY around the world. They are born with this and typically die in their mid 20's
Geographic areas served: the world
Programs: Collaborative team of scientist world wide
Natural History Study is being conducted at Columbia U.
Clinical Trial is to start in 2013 at UNC Chapel Hill
Professional with expertise in this field
I have been involved with this nonprofit for years now and still amazed daily at the accomplishments met. In just 4 short years the organization, which is a primarily family and volunteer driven, has done what they were originally told would take 10 yrs and 10M. This Charity brings 'fighter moms' and rare diseases to a new level. These families are amazing and these kids are precious. Thanks to Hannah's Hope Fund they now have hope where there once was non.