Sunshine ahead for Hannah’s Hope Fund
REXFORD — Sunday your running shoes can work twice as hard with no extra effort from you, all thanks to Warren Buffett’s sister. Until February of next year, your checkbook can give twice as much, again thanks to Warren Buffett’s sister. And Rexford kindergartener Hannah Sames can get closer to a cure — yes, thanks to Warren Buffett’s sister.
And yes, thanks to you, too.
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.
Every dollar counts, no matter how it’s raised. So if you participate in the 5-kilometer Run for Life on Sunday, Sept. 20 at Old Dater Farm in Halfmoon, your $25 entry fee ($15 for kids) will be worth $50 to the Hope Fund. There will be prizes for the top three male and female finishers. If you’re not a runner, there will be plenty of family-oriented activities at the race, and for $5 you can purchase a Hope Flag that will be placed along the race course.
The matching grant came about because of 84-year-old Niskayuna resident Ruth Schopmyer.
“She had heard about the Sunshine Lady Foundation on TV and decided just to write her a letter on our behalf,” said Lori Sames, Hannah’s mother. “Doris Buffett wrote back and said, ‘I’d be happy to make modest donation or perhaps a matching grant from a community event.”
Buffett’s letter asked for the Hope Fund to send the foundation more information.
“So I wrote a 3-page letter and included our slide show about Hannah and other children suffering from G.A.N.,” Lori Sames said.
She was surprised when within just a few days a Sunshine Lady Foundation representative called her. She was shocked when the representative told her the size of the modest donation.
“I heard her say, ‘Don’t pass out on me,’” Sames said.
So began “Hope for a Million.” Sames plans to organize the family-run, all-volunteer Hope Fund to make sure the goal is reached. Children’s lives are at stake, and there’s research to be funded. And with rare diseases such as G.A.N., the families and their foundations are often the driving force behind progress.
“These foundations do a great job moving in all directions: families, patients, community, research,” said researcher Thais Federici, part of an Emory University team that received a $30,000 grant from the Hope Fund. The Emory team is trying to find the best way to deliver an altered gene to the nervous system of G.A.N. patients.
The project is one of many the Hope Fund is sponsoring in its push to get clinical trials of a G.A.N. treatment by fall of 2011. And the impact goes beyond G.A.N. because any positive results bring hope and knowledge for people suffering from similar diseases.
“Any and all of these studies will be a foundation for other neurological disorders that require safe and efficient gene delivery to brain,” said Dr. Jude Samulski, director of the Gene Therapy Center at the University of North Carolina, which is also participating in G.A.N. research.
With lives at stake — many of them children’s lives — Sames isn’t about to let the opportunity for an extra $500,000 to fund such research go to waste. She is looking for every chance to get more for the money, pointing out that the Sunshine Lady grant will even double the amount given by companies that match their employees’ donations.
So if your company matches your donation dollar-for-dollars, that means “your $25 becomes $100,” Sames said. “Every penny that gets deposited into our account gets doubled.”
And that’s another penny towards finding a cure for Hannah.
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