Hannah's Hope Fund continues mission of eradicating GAN

SARANAC - Carrie Favaro hopes there will one day be a cure for a rare neurological disorder that affects someone near and dear to her.

Favaro's niece, Hannah Sames, who lives in the downstate hamlet of Rexford, was diagnosed with giant axonal neuropathy (GAN) in 2007, at the age of four. The disorder consists of dysfunction of a specific type of protein in the body's nerve cells and has affected how Hannah - daughter of North Country natives Matt and Lori Sames - walks, making it hard for her to maintain her balance.

"Hannah has been doing as well as she can," Favaro said. "She's actually dancing in what will be her last dance recital this weekend. We thought last year would be her last year dancing, but she was able to do it another year."

Hannah loves to dance, said her aunt. Even though Hannah is fully aware of her condition and now has to have assistance when on stage, there's no place she'd rather be, Favaro said.

"I know when she goes on stage Saturday night, she'll be in her glory," Favaro said. "Even with someone holding onto her. She just wants to be on stage."

Though Hannah doesn't question her condition and simply accepts the cards she's been dealt, Favaro said she and the rest of Hannah's family and friends won't stop questioning what can be done for Hannah and others like her. The combined efforts of Hannah's family and friends - under the nonprofit organization Hannah's Hope Fund - have amounted to $2.4 million raised to research and find a cure for GAN.

That is something that still amazes Favaro when she stops to think about it.

"It's overwhelming," she said. "We're so involved with finding a cure and holding all these events that we don't step back and think about that. We really have done a lot with the remarkable group of people we have."

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