Anna Gordon from West Virginia doesn’t let her Friedreich ataxia define her, and she encourages anyone with a rare disease to not let it define them either, reported Public Broadcasting. Anna was diagnosed five years ago but she continues to be relentless, making such a difference already within her community. With the help of her family, she created an organization called “Anna’s Army” that helps grow awareness and raise funds for the disease.
Friedreich ataxia, also known as FA, is rare neuromuscular disorder that attacks a patient’s motor skills and coordination initially, but can gain steam and lead someone to become diabetic, blind, deaf or even debilitated from scoliosis. It also promotes cardiomyopathy and early-onset of aging and death. It’s an aggressive disease that affects 1 in 50,000 individuals.
Anna was diagnosed at a young age, during her sophomore year of high school. It all started with her coordination dwindling her freshman year. She found herself losing balance constantly, and thus falling over. It took a full year for Anna and her parents to get the answer they were searching for. A unnamed geneticist gave them the diagnosis of FA, which was completely unknown disease to the Gordon family at the time. Frightened of what it could be and unknown to the severity, Anna’s mother, Missy instantly looked up the disease in detail after the appointment. She instantly learned their lives were about to change.
While Anna’s life did drastically change and the search for the cure remains ongoing, she isn’t going to just sit back and let this disease overpower her life. She decided she would make a difference. In order for a rare disease cure to be found, there needs to be money, and in order to raise money, there needs to be awareness. Anna and her “army” for that awareness. Anna, her sister, and a group of friends from Parkerburg South High School targeted their school’s basketball games because they previously found success raising money for other diseases. The idea ended up being a huge success and sparked something amazing.
While Anna has now graduated, her fundraising tradition still lives on, and it lives progressively, always becoming bigger and stronger. To date, her fundraisers have reached multiple states and acquired over $200,000 for FARA, Friedreich Ataxia Research Alliance. Anna has done so much, but she still has so much more she wants to do. She wants to find a cure, and it goes down to a race against the clock as she progressively declines herself.
To learn more about FARA and how to help, please visit here.