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Family Races Against the Clock for Treatment for Giant Axonal Neuropathy

Posted by | 11:36am on Thursday, September 27, 2012

Lori and Matt Sames are fighting for the life of their daughter, Hannah, who has the ultra rare disease, Giant Axonal Neuropathy (GAN). When Hannah was diagnosed in 2008 there was no GAN patient organization, so the family started Hannah’s Hope Fund. I’ve met Lori and Matt, and what they have accomplished is truly inspirational. The Sameses are one of the families featured in Siren’s book, Uncommon Challenge; Shared Journeys.

Now, a few years later, the Sameses are running a virtual biotech company from their kitchen table. Researchers have identified a gene replacement therapy and are ready to start clinical trials in nine children (including Hannah) at the University of North Carolina at Chapel Hill. The only thing stopping them is money. To fund the clinical trial will require $900,000 and Doris Buffett has offered a challenge grant of $450,000. The Sames family have until April 30, 2013 to raise the rest of the money. Learn more about their amazing efforts in the video below.

About Eileen O'Brien

Eileen has more than 16 years of digital healthcare marketing experience. She is an opinion leader on social media and biopharma, and has been invited to speak at industry conferences and quoted in publications.

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