GIBSON CITY, Ill. (WCIA) — Many people have fond memories of the town they grew up in, and 24-year-old Emily Young is no exception.

“I go back there now and didn’t know how great I had it, I think,” says Young of Gibson City.

But Young was thrown a curveball most don’t experience. She got a life-changing diagnosis at 12-years-old.

“Friedreich’s Ataxia is a rare, neuromuscular disease that affects everything from your fingers to your toes. It mainly affects balance and coordination. And everyone with the disease at some point does transition into a wheelchair for issues with walking,” says Young.
Young and her family knew very little about the disease when she was diagnosed. They immersed themselves in the research and a community of people also battling FA. That helped .. and so did family and friends in Gibson City.

“It’s definitely the type of small town community .. just being able to come together and lean on them for support .. it was truly amazing,” says Young.

Young’s family got involved in the Friedreich’s Ataxia Research Alliance, or FARA. They started fundraising and advocating for people in the FA community. Young’s sister even started working for the organization. Every summer, Young participates in a RideAtaxia event in Chicago. Dozens of people from Gibson City go to support.

“Raising awareness is everything. It’s, you know, the key to a treatment, and one day a cure. We have to get the word and get people to learn as much as they can,” she says.

While Young spreads the word, she’s also been busy building her future. She just graduated with her master’s degree in social work from the U of I. Her future is in giving back — like so many others gave back to her when she needed it most.

“Just to be able to see the people coming together like that definitely gives me inspiration to help people the best I can,” says Young.

For more information on FARA, click here.