"There's definitely a lot of community support for this," said Collins.
She said that news spread around the school district about the fundraiser, and one of the elementary schools started their own Penny War shortly after the high school's.
Because GAN is so rare and affects so few people, there is very little financial backing to fund research for finding a cure. However, doctors say, that with adequate finances, they could find a cure or treatment in as little as four years. A cure for GAN could also lead to a cure for Lou Gehrig's disease or multiple sclerosis because they are so similar to GAN.
"It's definitely taking its toll," said Lori Sames of her daughter's disease. "It's harder for her to do stairs. It's getting harder for her to pick up her legs. Her balance is definitely worse, but she's happy, and thankfully it hasn't occurred that there's anything wrong. We are preserving innocence."
Sames has dedicated much of her time to finding funding for a treatment or therapy for her daughter's disorder, doing everything from contacting philanthropists to planning charity golf tournaments.
"People are really getting creative and finding ways to donate in these tough economic times," said Sames. "Instead of going out to dinner with the four couples you normally go out with, someone will host it at their home and donate the money they would normally spend going out to dinner."
Another fundraising event will be held Sunday, March 29, when Drew Seeley, star of "Another Cinderella Story" and "High School Musical: The Concert," Savanah Outen, the band Push Play, Bre Morgan, Tiffany Giardina and Ruth Collins will perform at the Palace Theater in Albany from noon to 1 p.m. Following the concert there will be a meet and greet from 1 to 3 p.m. Tickets are $25 in advance and $30 at the door. Call the Palace box office at 465-4663 and press Option 2 to purchase tickets (you don't have to be a member). All profits go towards Hannah's Hope Fund.
For more information, visit http://www.hannahshopefund.org.""