Masquerade ball serves as benefit

PARKERSBURG – A masquerade ball to benefit research into a rare disease is returning for a second year on March 29 a the Parkersburg Art Center.

“A Night Behind the Mask: A Masquerade Ball to Cure Friedreich’s Ataxia” will begin at 6 p.m. March 29 at the art center at Eighth and Market streets in downtown Parkersburg.

Tickets are $25 and are available at McCrady Jones Nationwide Insurance on Murdoch Avenue next to Big Sandy or on Pike Street in south Parkersburg.

The social hour begins at 6 p.m. and the dance begins at 7 p.m. All proceeds from the event will benefit the Friedreich’s Ataxia Research Alliance (FARA). More information is available online at www.curefa.org.

The ball – and a variety of other events over the past year – is part of the efforts of Melissa and Scott Gordon, of Parkersburg, and the family’s efforts to help their daughter, Anna Gordon, who was diagnosed with Friedreich’s Ataxia at age 16 in 2013.

Through those fundraisers, the Gordons raised $36,000 for FARA in 2013 and have continued those efforts, while also raising awareness of the disease. Friedreich’s Ataxia (FA) is a rare neurological disease that currently has no treatment or cure and affects Anna’s balance and coordination.

Like most 16-year-old girls, Anna goes to school, has her driver’s license, works 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.

Anna started getting clumsy and falling in middle school and her handwriting was starting to dissipate. On a family trip to the beach, she could not stand up in water that was only knee deep. It took over a year for the family to get a diagnosis.

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.

“I felt like my whole world shut down when we found out,” said her mother, Melissa Gordon. “The doctors didn’t take much care in how they delivered the news. They gave us a large pack of information telling us what FA was and walked out of the room. There wasn’t even a box of tissues.”

Within that pack of papers was information about a non-profit working to find treatment and a cure for this genetic disease that they had just heard about for the first time. Melissa called FARA and before she knew it, she was in tears crying on the phone, surprised anyone could even understand her words. She spoke with Program Director Felicia DeRosa, who talked with her for over an hour and listened to all of her fears.

FARA connected the Gordons with David Lynch, M.D., PhD, a neurologist from the Children’s Hospital of Philadelphia, who works with FA patients.

“Dr. Lynch told us that life was still possible and that Anna can still chase her dreams,” Melissa said. “It was this hope that provoked Anna’s desire to create a fundraiser for FARA and chose a 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, she said.

“Anna went out and asked people for help personally,” Melissa said. “I think that is what made such an impact on people’s hearts,” adding Anna’s friends knew she could not wear heels with her dress so they took part in decorating sparkled sneakers together which they each wore.

Last year’s event had 300 people in attendance and raised $22,000, she said.

This year will be a very special year for Anna, as the 16-year-old plans on making the event an even larger success, donating the proceeds again to FARA to help support ongoing research and clinical studies in FA. Last year Anna was able to participate in a cutting edge MRI research study at the University of Minnesota funded by FARA.

She will also turn 17 on the day after the ball, Melissa said.

The ball is one of a variety of activities the Gordon family, their friends and Anna’s fellow students have been doing for the past year. “Anna’s Army” is a group of students at Parkersburg South who have formed “Anna’s Army,” wearing purple T-shirts “attacking ataxia” to various school functions and sporting events to raise awareness.