The Miracle of a Cure is Possible for Giant Axonal Neuropathy (GAN) Patients Like Hannah

Hannah’s Hope Foundation announced their plans for “Heroes For Hope” in a recent Press Release dated September 5, detailing their efforts to raise funds for a possible cure for Giant Axonal Neuropathy.

Press Release
September 5, 2012

One of the Wealthiest Women in America Gives $450,000 Challenge to Local Charity

Rexford, NY- Doris Buffett, founder of the Sunshine Lady Foundation and sister of famed billionaire investor Warren Buffett, has agreed to give Hannah’s Hope Fund (HHF) a $450,000 Challenge Grant to pay for a human clinical trial.  $900,000 is needed in order to pay for a human clinical trial for children at the University of North Carolina at Chapel Hill.  The trial is slated to begin in the Spring of 2013.

The miracle is close.  HHF has a scientific team that has developed a gene replacement therapy they believe will save the central nervous system for patients afflicted with GAN.  However, the $3.2m HHF has raised over the past 4+ years will be exhausted prior to the start of the clinical trial, and $900,000 is needed in order to pay for the Phase 1 treatments.

Matt Sames, father of Hannah and co-founder of HHF, said “Doris Buffett is a true American hero. She is interested in saving children, saving lives and helping humanity.  Her approach isn’t in the form of a handout, but rather a Challenge Grant that hopefully rallies a lot of people around our cause.”  Lori Sames, mother of Hannah and Executive Director of HHF says, “It’s an all-or-nothing challenge grant.  If we don’t raise $450,000, we won’t receive the matching funds.  So, the full court press is on!”

In order to raise the $450,000 needed for the grant, HHF is launching a fundraising drive called “HEROES FOR HOPE”.  Anyone can be one of our HEROES FOR HOPE, you just need to donate at least $50, send a solicitation to at least 100 people and get 3 other people to commit to do the same. Email, Facebook, Twitter, or traditional requests.  Visit www.hannahshopefund.org for more information and to donate directly.

What started out as a mission to save their daughter has grown into an international organization with a realistic path toward a treatment and a cure.  Generations of families may benefit from this therapeutic approach, and it could very well apply to kids and adults suffering from other neurodegenerative disorders such as SMA, CMT and up to 5% of ALS patients.

HHF, the world’s only Public Charity dedicated to the development of a therapy and a cure for Giant Axonal Neuropathy (GAN) was founded by Matt and Lori Sames of Rexford, NY when their daughter, Hannah, was diagnosed in March of 2008 at the age of 4.

Media Contact: Matt Sames, 518-275-6040, [email protected]