Hannah’s Hope Fund nears goal, deadline

CLIFTON PARK (Feb. 3) — Lori Sames has a short-term goal — a big one — and she’s focused on doing everything she can to make sure she succeeds.

She has until Feb. 15 to finish raising $500,000, and she is so close — about $20,000 away. The money is important for her long-term goal: saving her daughter, Hannah, and other children who suffer from giant axonal neuropathy. G.A.N. is deadly and has no cure. Sames is working to change that.

Hannah Sames and her mother, Lori, are seeking to find a cure for giant axonal neuropathy, a rare and deadly disease that Hannah suffers from.

Hannah Sames and her mother, Lori, are seeking to find a cure for giant axonal neuropathy, a rare and deadly disease that Hannah suffers from.

If Sames meets her goal, Doris Buffet — Warren Buffet’s sister — will match it dollar-for-dollar through her Sunshine Lady Fund, giving Hannah’s Hope Fund $1 million for research into G.A.N. treatment.

For inspiration, Sames looks to John Crowley, whose struggle to save his children inspired the new movie “Extraordinary Measures.” (“I’m so busy I haven’t had a chance to see it yet,” said Sames, who added her sister saw it on opening night.) Like Sames, Crowley raised money for research to save his children from a rare genetic disorder.

“What we have in common is that we deeply love our children and won’t take no for an answer,” said Sames, who met Crowley last March.

Sames hopes to be like Crowley in another way — having her sponsored research turn into a treatment that saves her child. Safety and efficacy studies are set to begin in March that could lead to clinical trials by the end of next year. But those studies and the clinical trials will be expensive, costing $1 million or more. That’s why Sames is hoping the Hope Fund qualifies for every penny of the Sunshine Lady’s matching grant.

To make sure the goal is reached, the Hope Fund has a number of fundraisers scheduled for this weekend. The highlight will be the Hope and Love Ball, a $150-a-person black-tie event Saturday night at the Desmond Hotel in Colonie. Doris Buffett is scheduled to attend the event. Before the ball, there will be a silent auction that is open to the public.

If you prefer pucks to a tux, Friday night will be Hannah’s Hope Fund night at the RPI hockey game. There will be face painting, clowns and chuck-a-puck. Also on Friday, the Hope Fund will be the beneficiary of Pasta Pane’s grand opening cocktail hour between 5-8 p.m. (Pasta Pane is a rustic Italian restaurant opening in the former Applebee’s building near exit 9.)

On Sunday, all admission proceeds from a bridal show at River Stone Manor in Glenville will go to the Hope Fund. Admission is $5 a person, and the show runs from 11 a.m. to 3 p.m.

Sames is thankful for all of the help she and the Hope Fund have received over the years — leading the possibility that treatment for G.A.N. could be a reality soon.

“Without the support of the community,” she said, “we wouldn’t be able to make this happen, and these kids would die a horrific death in their late teens and early 20s.”

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