Join us for the 2009 Run for Life 5k taking place on Sunday, Sept. 20th in Old Dater Farm in Halfmoon. All proceeds to benefit Hannah's Hope Fund. This is a family event with a children's race following the adult race. A bouncy-bounce and face painting will be provided for this fun-filled community event! To be a race sponsor, please contact Julie Gauer at To register for the race, paste the link below to your browser. http://www.active.com/page/Event_Details.htm?event_id=1716626&assetId=5E121CD2-6883-458E-A174-8C50295C4EF6Giant Axonal Neuropathy is a rare genetic disorder that slowly takes away one's ability to walk, use one's hands, speak, swallow and is terminal. We are a family driven 501C3 Public Charity, dedicated to funding research for a treatment and/or a cure for this horrible disorder.
Hannah's Hope for Giant Axonal Neuropathy (GAN)While 5 yr. old Hannah Sames is the inspiration for Hannah’sHope Fund, we very quickly realized a therapy to stop this ravaging disease is replicable and applies to any genetic disorder that impacts the central nervous system (brain and spine). Fortunately, scientists have made great gains with virus vectors that transport healthy genes to nerve cells, replacing the damaged or mutated gene. In Giant Axonal Neuropathy, it’s the GAN gene that is replaced with gene therapy. Hannah’s Hope Fund has raised enough funding to provide seed funding for a proof-of-concept study for GAN gene therapy. However, the following phases of this gene therapy project need significant external funding:
studies to determine the most effective AAV serotype and route of administration of the viral vector
studies to accomplish the necessary FDA efficacy and safety studies in order to gain approval for a Phase 1 clinical trial.
financial support for the clinical trial.
Once our clinical trial is proven successful, the same virus vector can be used to transport any gene to treat other genetically based neurological disorders like, Spinal Muscular Atrophy, Charcott Marie Tooth Disease, Freidrich’s Ataxia and Infantile Neuroaxonal Dystrophy, to name a few. We are so very anxious to move forward quickly to satisfy this unmet medical need. However we need funding in order to execute the plan we've devised with the best scientists in the world collaborating on this project. Thousands will benefit for generations to come. There is really little else in life that matters when innocent children and young adults are dying a horrific death from neurological disorders that are treatable, given funding and attention. Let your legacy be curing a devastating disease. Precious lives depend on us all.
