Amber Freed's Contact Details

Amber Freed's Company Details

The mission of Hannah's Hope Fund (HHF) is to raise funds for a treatment and cure of Giant Axonal Neuropathy (GAN). Lori and Matt Sames co-founded HHF following the diagnosis of their youngest daughter, Hannah, in March of 2008. At the time of Hannah's diagnosis, Lori was only able to find one scientist in the world actively studying GAN. Now, the scientists working with Hannah's Hope Fund have a GAN gene delivery Investigational New Drug (IND) and we are hopeful a Phase 1 trial will begin 2nd quarter of 2014. The goal of the gene delivery project is to rescue the nerves in the central nervous system by delivering a healthy copy of the GAN gene. We are working on a drug therapy approach to rescue the nerves of the peripheral nervous system. Intermediate filament aggregates are a hallmark of GAN and many other neurological disorders like, Alexander Disease, Dementia with Lewy Bodies, Alzheimer's Disease, ALS, Parkinson's Disease, Neural Intermediate Filament Inclusion Disease, Spinal Muscular Atrophy, diabetic neuropathy and some forms of Charcot-Marie-Tooth Disease. Our hope is that the drug(s) we discover that treat GAN will also impact related diseases. Then, we will be able to excite the pharmaceutical industry and have industry drive the drug(s) through commercialization.