by Brooke Buchanan
Many people know Anna’s Army, but few people know the sergeant behind the Army.
Anna Gordon was diagnosed with Friedreich’s Ataxia on the first day of her sophomore year of high school. “I had visited doctors for over a year trying to find out why I kept falling before a geneticist finally diagnosed it from a DNA blood test,” Gordon said.
The diagnosis was hard for 15-year-old Gordon to deal with. “I was told I would lose my ability to walk, write, speak, hear and see and do all the things I loved to do,” Gordon said. “She [the doctor] said I would die a premature death because of cardiomyopathy or heart problems.”
Although unaware until later in life, Gordon was born with FA, but didn’t notice until any signs until middle school. “As a child, I ran track, played basketball and played soccer. I was a cheerleader at Edison Middle School, and by the end of my eighth grade year, I could no longer do a high jump,” Gordon said.
Friedreich’s Ataxia affects one in 50,000, and the disease is genetic, although no one in Gordon’s family has had it. “One in one hundred people carry a recessive gene that causes it. The only way to have FA is to inherit the recessive gene from each of my parents,” Gordon said. “My parents had absolutely no idea that either of them were a carrier.”
Although Anna’s Army supports awareness of Gordon’s disease, the Army wasn’t formed by her. “It was formed by my sister, Ali, and her friends, Cody Hively and Jake Fieler,” Gordon said.
Gordon asked Parkersburg South High School’s basketball coach Mike Fallon if she could hold a FA awareness basketball game and he agreed. “Ali, Cody and Jake were seniors, and they got the students involved and started the Southside Psychos student section. They asked me what my favorite color was so they could get shirts printed for the FA awareness game,” Gordon said. “Cody called it Anna’s Army. I never dreamed it would grow as big as it did.”
Although graduating from Parkersburg South in 2015, Anna’s Army continues to fight on. “It is the best feeling in the world to have the support. I truly can’t imagine how kids in other communities deal with everything without the support,” Gordon said. “When I look out and see a sea of purple, it gives me hope for the future.”
Gordon states that FA is not incurable, it is underfunded. There is no treatment or cure either, but Gordon would like to do her part to change that. “Scientists know the gene and the protein involved. In a mice model in France, the disease was reversed. It’s just a matter of time before it will be reversed in humans,” Gordon said. “Last May, my friends at Friedreich’s Ataxia Research Alliance, 178 families affected by FA and 19 pharmaceutical companies, met with the FDA in Washington, DC. We are hoping to get some type of treatment soon. I have participated in research trials in Philadelphia and Minneapolis. I plan to participate more in the future.”
Over the past five years, Anna’s Army has raised $225,000 for research to cure FA. Although a masquerade ball is typically held as a fundraiser for Anna’s Army, a different event is being planned for the fall. “All the proceeds from our event will benefit the Friedreich’s Ataxia Research Alliance to help find a cure for all 15,000 of us worldwide with FA,” Gordon said.
Anna Gordon is an elementary education major and hopes to graduate in 2020. “I have always wanted to be a teacher, because I love kids,” Gordon said.
In her free time, Gordon loves to bake and watch horror movies. “My family always requests my cheesecakes because I make them from scratch,” Gordon said. “I even bake them in a water bath so they don’t crack.”
For more information about Friedreich’s Ataxia and ways to donate, visit CureFa.org.