Try 1 month for 99¢

GLENS FALLS -- Crandall Park was the scene of a slightly messy softball tournament on Sunday, March 14, but it was all for a good cause.

With rising temperatures and melting snow, the park has slid into what locals call "mud season."

More than 100 people descended on the park throughout the day to play in the "Angels in the Outfield Co-ed Snowball Softball Tournament" to raise money for Hannah's Hope Fund.

The event was organized by Kate Cochran of Northeast Promotional Group, who went to high school with Hannah's father, Matt Sames. He and his wife, Lori, of Clifton Park, received the devastating news that their youngest daughter, Hannah, now 6, was diagnosed with giant axonal neuropathy (GAN), a rare genetic disorder that slowly takes away one's ability to walk, use hands, speak, swallow and is basically a death sentence. They were told that there is no cure and little known about the disorder. The Sames began Hannah's Hope Fund to fund research for a treatment and cure for GAN, and have already made some important strides, hosting the first-ever symposium on GAN with 20 scientists from three countries who met in Boston.

Last October, Hannah's Hope Fund brought the top gene therapy labs in the world together to plan the GAN Gene Therapy Project, which is now a collaborative effort between the University of North Carolina at Chapel Hill, Emory University and Stanford University.

Once a successful gene therapy is found for treating GAN, the mechanism can be applied to other genetic neurological disorder such as ALS or Lou Gehrig's disease and spinal muscular atrophy.

Cochran wanted to help the family in their quest for treatment for Hannah and others with GAN.

"When I heard about Hannah, I attended a fundraiser and met her, and reconnected with her father and mother," Cochran said.

Subscribe to Breaking News

* I understand and agree that registration on or use of this site constitutes agreement to its user agreement and privacy policy.

She also helped out with other HHF events and decided to do something more.

"I have two friends who play in Vermont in a huge snowball softball tournament, and it sounded like a great idea," she said.

She sent e-mails and letters out to hopeful teams and sponsors, and attracted 11 softball teams at various sponsorship levels to play in Crandall Park on March 14.

Despite the chilly temperatures and windy conditions, the teams played throughout the day, and Cochran came close to her goal of

raising $3,000 for Hannah's Hope Fund.

0
0
0
0
0

Load comments