Seven-year-old Hannah Sames, front, with sisters Madison and Reagan, is the namesake for Hannah’s Hope Fund, a nonprofit organization seeking to cure her condition, giant axonal neuropathy (GAN).
Saranac Carrie Favaro is once again hoping for the support of the community in helping her niece and children just like her.
Favaro serves as president of the Hannah’s Hope Fund, a nonprofit organization seeking a cure for giant axonal neuropathy, also known as GAN. The foundation, named in honor of Favaro’s niece, 7-year-old Hannah Sames of Rexford, has been raising money for their cause since 2005. Most recently, the foundation has been entered into a contest to be awarded up to $250,000 through the Chase Bank Community Giving Contest, sponsored by J.P. Morgan Chase & Co.
“We were ranked number three, but we’ve slipped to number five,” said Favaro, referring to the on-line contest found on Facebook.
The contest, said Favaro, is similar to the Pepsi Refresh Project, another on-line contest in which Hannah’s Hope competed last year and was awarded $250,000.
“We’re hoping for another $250,000 miracle,” said Favaro.
Though one-quarter of a million dollars may seem like a lot of money, said Favaro, it’s a drop in the bucket when compared to the thousands upon thousands of dollars it takes to fund research of GAN through the University of North Carolina.
Regardless, the funding has helped the international team of researchers studying GAN to feel confident a potential cure could be ready for clinical trials in humans as early as 2013.
“Our scientists feel ready to go to the [Food and Drug Administration] and, with their timelines, we’re looking at a year from January where the first humans could be treated for GAN,” said Favaro. “Of course, that’s the best-case scenario.”
That’s a long way from where Favaro’s sister and brother-in-law — Hannah’s mother and father, Plattsburgh area natives Lori and Matt Sames — were when Hannah was diagnosed with GAN in 2008.
“We were basically told to go home and enjoy her because there might be nothing done in Hannah’s lifetime to help her,” said Favaro. “Now, here we are, four years later, only about a year away from the first human clinical trial. Everything has happened so quickly.”