Friday April 26th, 2024 11:42AM

N. Ga. family opens up about efforts to battle rare disease

By Staff
DAWSONVILLE - Meet the Stacks family - a normal family with two kids who love to play and have fun, only this family is battling a rare genetic disease that only affects 15,000 people worldwide - a disease they had never even heard of. This disease is Friedreich's Ataxia (FA) and both Hannah (age 10) and Austin (age 6) have the genetic disorder.

FA is a degenerative neuromuscular disease that results in a life altering loss of coordination and balance and a serious heart condition called cardiomyopathy. Many FA patients are bound to their wheel chairs, losing their ability to walk and having their speech and other functions affected, as they fight their battle. There is currently no known treatment or cure but the Stacks family is working toward that end - and finding a cure.

Following Hannah's FA diagnosis in 2009, the family immediately found FARA (Friedreich's Ataxia Research Alliance) and began working on efforts to support research for a cure. What began as a simple letter-writing campaign with family and friends evolved into a large-scale fundraiser, Swing Away at FA, a wiffle ball tournament and family fun day. The tournament represents a lot more as the Stacks family raised over $35,000 last year alone
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