Get to Know the Founder of the Fight Ataxia Project

If you ran into Oak Forest resident Jonas Cepkauskas, walking down the street with some of his friends, you'd most likely think they had had too much to drink.

Cepkauskas admits that's what most people see—it's the main reason he founded the Fight Ataxia Project.

Cepkauskas, along with the other members of the Oak Forest-based group, all suffer from the progressively degenerative neurological disorder Ataxia. Simply put, the signals from your brain that tell the body what to do can't get to their destination. The result is complete lack of balance, stiffening joints, muscle atrophy, dizziness, and overall lack of coordination—it's often called,  "The Drunken Sailor Disease."

The group gives those with Ataxia a place to go, and people to be around who won't judge.

"People can get out and be themselves for a day, and not worry about people pointing and whispering," Cepkauskas said.

He was diagnosed 15 years ago and has worked with Dr. Christopher Gomez, who recently started an Ataxia research clinic. Cepkauskas centers the organization around uniting people who share the disease and the experiences surrounding it.

"Our focus is on helping people today, rather than people sitting around, waiting for the near future," he said. "I do as much for Ataxia-related events as I can."

The group is a 501c3 whose efforts include outings and fundraisers, like the walk-a-thon "Walk This Way," to be held June 25 at Standard Bank Field in Crestwood. Group members who are able will walk, while others might roll along in their wheelchairs.

Other events include town hall gatherings, where Cepkauskas presents medical facts and information on the disorder.

"We want to inform people, let them know that attitude is one of the best tools that you can have," he said.

The next town hall meeting will be held April 30 at the Oak Lawn Elks Club.

Visit the group's website for more information on any upcoming events.