Albany Times Union Article

posted Sep 8, 2010, 5:52 AM by Heather Burnell

Looking for the next windfall

By CATHLEEN F. CROWLEY Staff WriterPublished:
12:00 a.m., Wednesday, September 8, 2010

CLIFTON PARK -- Even with a $250,000 Pepsi grant in the pocket, the fundraising machine behind Hannah's Hope Fund presses on.

The charity created by the family of Hannah Sames is raising money to find a cure for a rare disease that afflicts their 6-year-old daughter. Hannah, who got on the bus on Tuesday to start first grade, has giant axonal neuropathy, a disease that progressively attacks nerves that communicate with the brain.

Hannah's Hope has raised about $2.3 million and estimates it needs another $1.1 million to complete the safety, efficacy and clinical trials on an experimental therapy for GAN. The group won a $250,000 grant from Pepsi last week, but they need more.

"Biomedical research is insanely expensive," said Lori Sames, Hannah's mother and executive director of Hannah's Hope Fund.

The group has several fundraisers lined up to raise money for medical research.

Sept. 11, a "Game Watch" at the Recovery Sports Grill, 235 Hoosick St., in Troy. There will be a raffle, silent auction and food during the Notre Dame vs. University of Michigan football game. Doors open at 3 p.m.

Sept. 19, Run for Life 5K to benefit the Hannah's Hope Fund at Old Dater Farm in Halfmoon. To register, go to http://www.active.com/running/clifton-park-ny/old-dater-farm-run-for-life-to-benefit-hannahs-hope-fund-2010 or call 373-2721.

Oct. 2, Texas Hold 'Em for Hannah at the American Legion on Grooms Road in Halfmoon. To reserve a spot, contact mdurand@nycap.rr.com or lspraker@nycap.rr.com. Doors open at 3:30 p.m.

The Sames family is meeting one of their benefactors in a couple of weeks. Doris Buffett, the sister of billionaire Warren Buffett, gave a matching contribution during an earlier funding drive. The family will meet up with her in Maine.

The Pepsi grant has "leapfrogged" Hannah's Hope forward, Sames said. It was so successful that they are considering trying for another Pepsi grant in October or November.

"The outpouring of support we are getting from this community is amazing," Sames said. "People are really happy that they helped make this happen for us."

Cathleen F. Crowley can be reached at 454-5348 or ccrowley@timesunion.com.

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