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  • The Story of Hannah's Hope Fund

    6,173 views 4 years ago
    Giant Axonal Neuropathy is a ravaging, neurodegenerative disorder that steals life in the second or third decade after rendering it's victims quadriplegics, unable to speak or swallow. 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, Dr. Pascale Bomont, in France. Now, the scientists working with Hannah's Hope Fund have a GAN gene therapy Investigational New Drug (IND) that we are working to push to Phase 1 and Phase 2 clinical trials. However, once HHF is done paying for the FDA required safety studies, there is no money left to fund the human Phase 1 trial. Another miracle has occurred! Doris Buffett's Sunshine Lady Foundation has given Hannah's Hope Fund an "all-or-nothing" matching grant challenge. If you help us raise $450,000 by April 30th, 2013, The Sunshine Lady Foundation will provide a $450,000 matching grant. Please help us save precious and innocent lives being taken by GAN. Donate at: www.hannahshopefund.org and share this Youtube link with everyone you know. Families with GAN world-wide are eternally grateful for your support. Show less
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