PARKERSBURG - Since being diagnosed nearly two years ago with Friedreich's ataxia, Anna Gordon has found herself doing a lot more public speaking.
"I always thought it was fun," she said, noting she often volunteered to do presentations in classes, "but I never really had a reason to before this happened."
Gordon spoke Monday to members of the Parkersburg Rotary Club at their meeting in the Blennerhassett Hotel. She shared her journey since being diagnosed with the neuromuscular disease - which affects one in every 50,000 people - on the first day of her sophomore year at Parkersburg South High School.
Photo by Evan Bevins
Incoming Parkersburg South High School senior Anna Gordon discusses her battle with Friedreich’s ataxia and the community support she’s received during Monday’s Parkersburg Rotary Club meeting at the Blennerhassett Hotel.
Gordon admitted she gets nervous before and after such speaking engagements.
"But while I'm doing it, I'm very calm and relaxed," she said.
Friedreich's ataxia causes loss of coordination, muscle loss, visual impairment, slurred speech, aggressive scoliosis and more, including cardiomyopathy, an enlargement of the heart that can eventually prove fatal. There is no treatment or cure, but as she approaches her senior year at South, Gordon and her family are continuing to work to change that by raising money for the Friedreich's Ataxia Research Alliance.
* For more information or to donate to the Friedreich's Ataxia Research Alliance, visit www.curefa.org or call (484) 879-6160.
* To follow Anna's Army on Twitter: @JoinAnnasArmy
So far, they've raised more than $56,000 thanks to the support of her classmates and the community.
"I conned my friends into washing cars for me for the day," laughed Gordon, recalling one of the fundraisers.
The support is more than monetary. When the family organized a masquerade ball to raise money for the alliance, those friends weren't about to include high heels in their ensembles if the guest of honor couldn't.
"Since I have no balance or coordination, all the girls were wearing big, fancy dresses with tennis shoes that they bedazzled" and otherwise decorated, Gordon said.
The Parkersburg South basketball teams and their fans, the South Side Psychos, led the charge in creating Anna's Army, wearing purple T-shirts with the slogan "Attacking Ataxia" at games all the way to the state tournament. The shirts and the sentiment have spread well beyond the school.
"It's really overwhelming," Gordon said. "It's great to see everyone out there."
South alumnus and Florida Gulf Coast University basketball player Chase Fieler writes "Anna's Army" on his shoes before each game, Gordon told Rotarians and was Gordon's prom date this year.
During her presentation, Gordon shared a slide bearing the Bible verse Philippians 4:13, which says, "I can do all things through Christ who strengthens me," which has served as a motto for South's wrestling team. After alluding to a controversy when a complaint made by the Wisconsin-based Freedom from Religion Foundation resulted in the verse being removed from the team's page on the school website and painted over in the gym, Gordon said the verse is important to her as well.
"That doesn't always mean winning - it could just mean getting through every day," she said.
Although they're in something of a race against time with the progressive disease, Anna's mother, Melissa, said there's reason for hope. Scientists have learned much about Friedreich's ataxia - including the gene in which it's located and the protein to which it's linked. After Anna's presentation, Melissa Gordon told club members a doctor told her if one famous person had the disease, the awareness would be enough to push fundraising efforts over the top.
"You mean more famous (than Anna), right?" joked Kim Couch, program chairwoman for the club and a friend of the Gordon family.
The cause got one more donation Monday when Rotarian Don Dooley won the 50/50 drawing and told Couch to "just add it to the $56,000."
Asked why he made the gesture, Dooley said it was simple, he has two daughters of his own.