Posted: Friday, October 18th 2013 at 1:11pm
N. Ga. family opens up about efforts to battle rare disease
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 – and those funds went to support research for treatments and a cure to help not only their children but many others.
“From the very beginning, we put all of our hope in FARA,” said Candy Stacks, Hannah and Austin’s mother. “Through FARA, we have been able to connect with the absolute best physicians and FA patients, and have watched researchers continue to make progress for a cure.”
The Stacks are now taking their role and support for advancing research down a new path. Not only are they raising funds for research but they are also participating in a new clinical trial. Hannah was accepted into a clinical research trial at Children’s Hospital of Philadelphia. In fact, Hannah flew to the world-renowned hospital and research facility earlier this month for the first time to begin the study.
The family’s hopes are high that FARA will continue to bring together the world’s best FA researchers to work together for one common goal: a treatment and cure for the debilitating disease.
For more information about the Stacks Family or Swing Away at FA, please visit www.swingawayatfa.com.
*EVENT DETAILS: SWING AWAY AT FA
Noon on Saturday, Oct 19
1174 Grizzle Road, Dawsonville
$10 general admission; $25 to play in tournament; $5 lunch plate
Link: Swing Away At FA
Link: Cure FA
Associated Categories: Local/State News
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