October 2, 2012

Challenge grant brings more hope to Hannah's Hope

PLATTSBURGH — Hannah's Hope will receive a huge boost from one of the nation's wealthiest women, if a $450,000 challenge is matched by volunteer donations.

Doris Buffett, founder of the Sunshine Lady Foundation and sister of billionaire investor Warren Buffett, has agreed to donate $450,000 toward the cost of an upcoming human clinical trial for children afflicted with giant axonal neuropathy (GAN), a rare central nervous system disease that impacts a child's ability to control movement of arms, legs and other parts of the body.

The trial, scheduled to begin in the spring of 2013, will cost an estimated $900,000, which means the Hannah's Hope Fund has to raise the remaining half in order to collect Ms. Buffet's donation.

"It's an all-or-nothing challenge grant," said Lori Sames, Hannah's mom and executive director for the Hannah's Hope Fund. "If we don't raise $450,000, we won't receive the matching funds. The full-court press is on."


Lori and Hannah's dad, Matt Sames, who were both raised in the Plattsburgh area and now live in Rexford, north of Albany, first learned of their daughter's condition in 2008 and have since created the only public charity dedicated to the development of a therapy and cure for GAN.

The fund has raised more than $3.2 million toward research, but that money will be exhausted before the start of the clinical trial, in which Hannah will participate.

"The trial is a treatment," said Hannah's aunt Carrie Favaro from Plattsburgh. "It will not repair damaged nerves but should stop the disease from progressing any further."


Ms. Buffet had donated $500,000 toward the Hannah's Hope Fund a few years ago and met Hannah during the family's annual fundraising ball in 2011.

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