By MICHELLE BESAW
PLATTSBURGH — Over the past year, Hannah Sames's walking has deteriorated.
She holds onto someone's hand or the wall, and an aide helps her get on and off the bus.
But the 5-year-old, who was diagnosed with giant axonal neuropathy, deals every day with the rare disorder, which affects her motor skills.
DEADLINE NEARS
And while she struggles with her condition, Hannah's Hope organizers strive to raise $83,417 to help fund treatment research for the terminal disease.
With that money, the group will have raised $500,000 toward Ms. Doris Buffett's Sunshine Lady Foundation's matching grant, which began Aug. 15. The deadline is Feb. 15 and so far they have raised $416,583 in donations.
To get there, organizers are promoting several fundraising events and hoping for an appearance on NBC's "Dateline."
Carrie Favaro, Hannah's aunt, said Hannah's parents, Matt Sames, a graduate of Plattsburgh High School, and Lori Burnell, a Beekmantown High graduate, spoke to a producer at NBC about the possibility of a one-hour "Dateline" show or a segment on the "Today" show.
"(The producer) knows that Hannah's Hope was instrumental in getting Rare Disease Day recognized," Favaro said. "We joined Europe in recognition of that day," which is the last day of February.
"National coverage is huge," Favaro continued.
COST IS GREAT
Until then, the group is leaning on local efforts to raise enough money to keep the research under way.
"I'm always in awe at how generous people have been able to be, given the state of the economy," Favaro said. "It's amazing really."
In the last 22 months, Hannah's Hope has raised nearly $1 million, but organizers will need much more than that to continue their effort.
"To put it into perspective, to maintain the mice colony at UNC Chapel Hill, it's about $4,000 per month," Favaro said.
"As we get to larger animal studies, it gets more expensive. To produce the clinical grade viral vector for the clinical studies, it is between $500,000 and $600,000."
It will also cost between $35,000 and $40,000 per patient for the eventual treatment.
Six kids with GAN between the ages of 6 and 18 need to go to pre-clinical testing required by the FDA before a trial can take place on March 7. That testing will cost $750,000 to $1 million.
"Over the next two years, we need a total of $2.5 million in addition to what we already have raised," Favaro said.
POKER TOURNEY
On Jan. 30, Hannah's Hope will hold a Texas Hold 'Em poker tournament at the American Legion Post 1619 in West Plattsburgh.
To enter, people can send a $60 donation to Hannah's Hope Fund, 11 Burnell Lane, Plattsburgh, NY, 12148.
Participants can enjoy a buffet dinner, starting at 4:15 p.m. The tournament begins at 5 p.m.
Prizes will go to at least 25 winners, including entrance to a Texas Hold 'Em Tournament at Foxwoods Casino.
"We've had tremendous response as far as donation of prizes," said Hannah's grandfather Earl Burnell, of Plattsburgh. "We hope to give prizes to the top 30 players.
"ORDA came through with some real nice things," Burnell said.
Prizes include four ski passes to Whiteface, a bobsled ride for two, gift certificate to Adirondack Steak and Seafood in Lake Placid, gift certificates to local golf courses and a one-night stay at the Mirror Lake Inn in Lake Placid.
"It's a menagerie of gifts," Burnell said. "Just the other day, Sears donated a two-propane burner gas grill, and G&G; tire donated a gift certificate for a front-end alignment.
"If you make the top 25, you should at least get your money back or close to it."
About 50 people have registered so far, Burnell said, and the tournament will cap at 100.
He said he hopes the fundraiser will bring in $5,000 to $6,000, which will be matched with the Ms. Doris Buffett's Sunshine Lady Foundation's matching grant, a Nebraska-based private foundation favoring grass-root organizations.
"Ninety-nine point nine percent of our money goes into research, in one aspect of it or another," Burnell said. "These kids, their lives are depending on us."
E-mail Michelle Besaw at: mbesaw@pressrepublican.com
