PARKERSBURG – With the help of the local community, thousands of dollars were raised Saturday night to help fund research into a rare disease during a masquerade ball at the Parkersburg Art Center.
“We have raised $16,000 so far this year and hope more money comes in the next couple of days,” said Melissa Gordon, an organizer of the event.
More than 300 people filled the third floor of the art center for the second year of the masquerade ball, which raises money to benefit the Friedreich’s Ataxia Research Alliance (FARA). More information is available online at www.curefa.org.
Gordon and her husband, Scott, of Parkersburg, have organized the ball for the past two years along with several other events throughout the past year to help their daughter, Anna Gordon, who was diagnosed with the rare disease last year at age 16.
“Even though I felt my whole world stop when we got the diagnosis, we are lucky she was older when symptoms began,” said Gordon. “The older patients are when they are diagnosed, the slower the progression of the disease, so we are lucky.”
Like most teenage girls, Anna goes to school, has her driver’s license, has a part-time job at Subway, wants to be a teacher and to make a difference in the world. She’s passionate about supporting the effort to cure FA. Anna was diagnosed with FA on her first day of her sophomore year in high school last year after more than a year of suffering unexplained issues, her mother said.
“She had become more clumsy and was losing her balance and her handwriting had started to change,” said Gordon. “It took more than a year and a number of tests before we found a geneticist who ran a DNA test and found FA.”
Through fundraisers, the Gordons raised $36,000 for FARA in 2013 and are continuing their efforts, while raising awareness of the disease. Friedreich’s Ataxia (FA) is a rare neurological disease that currently has no treatment or cure and affects the balance and coordination of those affected.
Friedreich’s ataxia is a rare, degenerative, life-shortening neuro-muscular disorder that affects children and adults, and involves the loss of strength and coordination usually leading to wheelchair use; diminished vision, hearing and speech; scoliosis (curvature of the spine); increased risk of diabetes; and a life-threatening heart condition. There are no FDA-approved treatments.
“When we got the diagnosis, the doctors didn’t really offer us much sympathy or consolation,” Gordonsaid. “There was no box of tissues in the room and all they did was tell us what was wrong and handed us a large pack of information that told us what FA was before they walked out of the room.”
Based on that information, she spent the next several weeks doing her own research into FA and what it meant for not only her daughter, but the entire family.
“In the pack was information about a non-profit organization working to find treatment and a cure for this genetic disease and we went from there,” she added.
The Gordons got in touch with the organization, FARA, which connected them with David Lynch, M.D., PhD, a neurologist from the Children’s Hospital of Philadelphia, who works with FA patients.
“Dr. Lynch is a wonderful man who has taught us that Anna can still chase her dreams and reach them,” Gordon said. “Because of this hope, Anna decided to create a fundraiser to help FARA find a cure.”
That fundraiser was the now annual masquerade ball.
For last year’s inaugural ball, the community rallied behind the family and donated items, the venue, decorations and the event took off, Gordon said.
Because Anna cannot wear high heels, her friends decorated their sneakers so she would not feel left out wearing her casual shoes with the fancy dress.
“We are very blessed to live in a community that has really stood up and rallied around Anna,” Gordon said. “The kids have stepped up and supported her through every thing and because of that, Anna wants to be an example for others with FA, that they can still do whatever they want and their dreams are reachable.”
Last year’s event had 300 people in attendance and raised $22,000, she said.
There is hope Anna could soon join one of four upcoming phase 2 Federal Drug Administration (FDA) clinical studies of medications that could treat FA. Through FARA, Anna participated in an cutting-edge MRI research study at the University of Minnesota last year.
“On March 17 this year the FDA fast-tracked a new drug in clinical studies that looks promising, so you never know when everything could change for the better,” said Gordon.
For now, the Gordon family plans to continue to raise money for research in hopes to help Anna and the other 18,000 people living with FA.