Hannah's Hope organizers are taking every opportunity to raise money toward finding a cure for giant axonal neuropathy.

The organization, which has local ties, has entered into the Pepsi Refresh Project, a nationwide program that gives out grants to thousands of causes and ideas.

To qualify, the cause must receive enough votes to put it in first or second place.

Hannah's Hope is currently in 14th place in the $250,000 category.

The monthly contest ends Aug. 31.


If won, that money will go toward continued research and test trials in an attempt to find a cure for GAN, a rare and terminal genetic disorder that takes away one's ability to walk, speak and swallow.

Hannah's Hope was created by Hannah Sames's family when they discovered the little girl had the rare disorder. Hannah's parents are Matt Sames, who graduated from Plattsburgh High School, and Lori Burnell, who is a Beekmantown High graduate.

Carrie Favaro, Hannah's aunt, said local support has been key in the non-profit's fundraising efforts.

"We just have a large base of support," she said of their standing in the Pepsi Refresh Project. "It's another example of all the great support we've had all along."


People can vote for the cause every day by going online or by text.

In under one day, Hannah's Hope jumped from 57 to 46, which tells Favaro placing in the top two is certainly possible.

"We're very aggressively promoting it," she said, adding that they've partnered with other projects, such as Monkey in my Chair, a group that puts together kits for children away from school for cancer treatments.

Favaro, like her sister, Lori, spends time passing out fliers everywhere, from grocery stores to skate parks, soliciting votes for Hannah's Hope.

She said skate parks are great because teens can vote right there by sending a text from their cell phones.


But even with those attempts, she said there's plenty of work to do.

While the non-profit succeeded in surpassing the $500,000 matching grant through Ms. Doris Buffett's Sunshine Lady Foundation, "things have kind of slowed down," Favaro said. "I think we kind of expected that."

Upcoming fundraisers include a golf tournament in Colonie, a 5K walk/run in Half Moon Sept. 19 and a Texas Hold 'em poker tournament Oct. 2.

Money from fundraisers will help cover large-animal toxicology studies, pre and post studies, as well as research facilities.


"When you think about the amount of money we've raised, $2 million in over a two-year period, that's huge," Favaro said.

"But we still have a long way to go."

She said they're about $1.3 million away from where they need to be by fall 2011.


For now, Hannah is getting ready to start first grade. Her aunt said she will likely use a walker, since her walking has become very labored.

This past year, Hannah played T-ball and ran the bases with the help of her mom.

"It's probably the last time she'll be actually participating," Favaro said. "But she's out there, she's part of the team, and she's happy."

That's an outlook Hannah has maintained. While she understands she has trouble walking, she's still an upbeat and happy 6-year-old, Favaro said.


The Pepsi Refresh Project is another opportunity for people to step up and help kids, like Hannah, who have GAN, Favaro said.

"The North Country, as far as I'm concerned, has helped us reach every milestone. This doesn't cost them a cent.

"It's very doable," she continued about the effort to gain votes.

"If we can move from 57 to 46 in one day, it's very doable."

E-mail Michelle Besaw at: mbesaw@pressrepublican.com

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