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Phone: 518 792 1568
PO Box 130
Rexford
New York 12148
USA
Website
2013 Top-rated nonprofits and charities

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Target demographics: patients with GIANT AXONAL NEUROPATHY around the world. They are born with this and typically die in their mid 20's

Someone who had 3 hours of volunteer time could: work an event, join a committee and help kids around the world who will die without your help

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

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.

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10/17/13
I have met Hannah and her lovely family through some volunteer work I did a few years ago, helping with publicity and flyers for an event. HHF is different from other non-profits in that all members of their organization go above and beyond every day to make a difference in the lives of children ... more »
10/17/13
From the seeds of a tragedy sprang hope. That is the basis for this family-led charity. Facing a death sentence for their daughter, Lori and Matt Sames planted the seeds which now have HHF on the brink of a scientific breakthrough, fostering hope for all families with children affected by GAN and ... more »
09/08/13
Hannah's parents started this fund and brought together the GAN community giving families a voice, a friend, and hope. They and their many volunteers have worked to raise money and help start a treatment plan for GAN. Hannah's parents found any researcher who had worked on GAN and made a team of ... more »
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