REXFORD - Hannah's Hope Fund has done it.
The nonprofit organization - whose mission is to eradicate giant axonal neuropathy (GAN), an inherited neurological disorder - has been awarded a $250,000 grant from the Pepsi Refresh Everything Project. The highly-competitive grant is available on a monthly basis to qualifying organizations and is one Lori Sames, executive director of Hannah's Hope Fund, wasn't sure her organization would get.
"It's quite a miracle when you consider the other organizations we were up against and the huge following they had," said Sames, whose organization is named for her daughter, Hannah, who has the rare disorder.
Hannah's Hope Fund had been competing against 1,231 other submissions in their category for the Pepsi grant since Aug. 1, and was holding steady in the double-digit rankings until the second week of August. The organization began to rapidly move up the list, resting in the number four position until breaking into the top three in the final days of the month.
Sames attributes that to the hard push of Hannah's Hope Fund supporters in their eleventh hour.
"We had been going full-speed for the last two weeks," said the Beekmantown native. "It was nonstop, even going up to a complete stranger on their cell phone and asking if they'd send a text message vote for Hannah's Hope Fund."
In the final days of the competition, it was a tight three-way race between Hannah's Hope Fund and CureJM, another nonprofit trying to raise awareness of juvenile myositis, and the International Rett Syndrome Foundation, a nonprofit looking for a cure to a rare neurodevelopmental disorder.
On Aug. 31, Sames and Hannah's Hope Fund supporters invaded busy intersections in the Capital District handing out voting instructions and asking people to vote before the midnight deadline.
"It was insanity," said Sames.
That night, Hannah's Hope Fund had slipped to number three. Considering only the top two projects in their category would receive funding, calls went out across the country to get people to place last-minute votes.
"Everyone immediately started calling their West Coast contacts trying to rally and get more people to vote," said Sames. "It was a full-court press."
When Sames and her husband, Matt, a Plattsburgh native, went to bed that night, the outcome of the competition was unclear.
The next day, however, Sames said she woke to see the word "finalist" on the Hannah's Hope Fund page for Pepsi Refresh Everything, later learning the organization had ranked number two in the end.
"When we went to sleep, the last thing I said to my husband was that you never know what tomorrow brings," she said. "I had this feeling in my gut that we would have good news in the morning."
"It was a miracle indicative of the miracle we're going to pull off for these kids," Sames added.
Hannah's Hope Fund will now put the Pepsi Refresh Everything money toward clinical human trials of gene therapy to correct GAN. The overall cost of the trials is estimated at $1.3 million.
"We thank the North Country from the bottom of our hearts," said Sames. "The help of the entire North Country, the entire Capital District, everyone, is what made this happen."
For more information about Hannah's Hope Fund or how to help, visit www.hannahshopefund.org.