Research fundraiser more than doubles goal
PARKERSBURG – Melissa Gordon and her family set out to raise $10,000 to give to the Friedreich’s Ataxia Research Alliance (FARA) in her daughter Anna’s name.
What they actually raised was close to $25,000. Gordon said her family was overwhelmed by the generosity and outreach of the community.
“We set out to raise $10,000 and raised $22,000 and money is still trickling in,” Gordon said of the masquerade ball held to help her daughter fight Friedreich Ataxia (FA), the disease she was diagnosed with during her freshman year of high school.
“We are shaking some trees for finding the cure and research,” she said.
Anna, who is in the Parkersburg South High School class of 2015, has not given in to the disease but wants to do something to help others who are suffering.
The Gordons have been working to raise the money for FARA, a nonprofit, tax-exempt organization dedicated to curing FA through research, according to the website (www.curefa.org).
FARA was founded by parents and individuals affected by FA in 1998. Since then researchers have made ground-breaking discoveries, officials said.
Jennifer Farmer, executive director of FARA in Downingtown, Pa., said recent studies have shown the gene causing the mutation in FA patients can be identified. She said in 2004 researchers understood enough to have two or three mechanisms but only one or two drugs were in the treatment pipeline.
“We know it’s not just a one drug and done,” Farmer said. “That’s why we have such a diverse treatment approach.”
Farmer said researchers have come close in France and Italy to finding the cure for the disease, and research is also being conducted at Ohio State University.
There is a clinical research center at OSU, which is part of the clinical trials doing research on how to measure the disease, knowing what tests to do and people to treat to see if it helps, she said. The Columbus laboratory also conducts cardiac research to understand what goes wrong in the hearts of people with FA; it’s not only a neurological disease but the short lifespan is due to cardiomyopathy.
The research team in France has found a way to modify the gene therapy using laboratory mice. Mice born with the mutation generally died at 11 weeks of age but the team has found it can correct the copy of the gene, allowing for the mice to live their normal lifespan without a cardiac disease shortening it. They have learned how to replace the gene to prevent the disease and how to stop the disease in mice born with it, Farmer said.
Melissa Gordon said work being done to help cure FA continues to progress. She is excited with each new discovery.
“So we are very, very optimistic,” she said. “This all comes at a great time.”
Anna Gordon said her favorite part about the masquerade ball last Saturday night was having the support of her friends.
“It was pretty exciting,” she said of the ball held at Woodridge Plantation Golf Club ballroom in Mineral Wells. “Sometimes I can’t wear high heels so (Anna and her friends) bedazzeled sneakers.”
Melissa Gordon said the event was sold out, with 300 tickets. The golf club donated the room and DaVinci’s of Williamstown donated the food. Pepsi and McCrady Jones Insurance also were instrumental in bringing the event, she said.
Anna said she was happy to have her friends wearing what she wore. She gives them a lot of the credit for helping her family accomplish its goal of raising money to help find a cure.
“We got our pictures taken and had silly masks and big lollipops; we took some goofy pictures,” Anna said of the masquerade ball.
Parkersburg South student Aaron Cronin wrote and performed a song titled “You’re Not Alone” to show Anna how much support she has from her peers. Breyer White helped produce the album, “Original Thoughts,” of these songs.
Cronin said the music can be purchased for $10 at McCrady Jones Insurance. He said the inspiration for making the album was to help people, including his friend of two years, Anna.