On Saturday, hundreds of people are expected to walk or run in a benefit race to raise money for a little-known disease that is personal for a former Warrenton resident.It’s a disorder that Julie Myers first discovered after a series of doctor’s visits for her son, Justin, beginning in June of 2011. Justin was experiencing a lack of balance and what Myers first wrote off as “general clumsiness.” But doctors suspected he might be suffering from Friedreich’s Ataxia (FA), a rare genetic disorder that damages the nervous system.The disease affects the spinal cord and the nerves that control muscle movement in the arms and legs of about 5,000 Americans. The main symptom is ataxia, which means trouble coordinating movements. People with Friedreich’s Ataxia usually need a wheelchair 15 to 20 years after symptoms first appear. The disorder is so rare that doctor’s advised Myers to seek advice from the Internet.What she learned left her bewildered and heartbroken. Discovering her son would not enjoy the typical experiences of other teenagers left her shattered. She said it was more painful than the grief she experienced when family members had passed away. “I have never mourned anything as much as I mourned the loss of my hopes and dreams for him,” said Myers. “It was very painful.”Justin, who was 16 at the time of his diagnosis, has since graduated from Troy High School and is attending Southeast Missouri State.“I want him to enjoy his life,” said Myers. “He deserves to have the college experience.”Justin underwent spinal fusion at 17 because of the disease and is trying to live as normal of a life as possible, according to his mom. He is coping with the fact that most FA patients have a life expectancy of just 25-35 years.Julie takes some comfort in the fact that the disorder is strictly physical, and does not impact his mental capacity.“It never affects his mind,” said Julie. “He has this beautiful, wonderful mind that’s trapped in this body.”Julie, who says she is bolstered by her belief in God, has accepted her role as the mother of a son afflicted with FA, but refuses to be complacent with doctor’s advice of ‘making her son comfortable for the next 10 to 20 years.’Instead, Julie has decided to be proactive.With the help of her sister, Jodi, she organized Slim’s Journey: A Journey of Hope. Slim is Justin’s nickname, coined by her husband, Jeff.“(Organizing the event) was a little overwhelming at first, but the whole process has turned out to be very therapeutic for me,” said Myers. “Just putting together the information so people better understand FA helps.”During the inaugural 5K run and 2.5K walk last September, Myers was able to raise over $20,000 to benefit the Friedreich’s Ataxia Research Alliance.She never imagined reaching that goal or the overwhelming participation of 350 walkers and runners.There is currently no cure or treatment for FA, which impacts 31 young people in Missouri.“There’s a community for the parents of kids with FA,” explained Myers. “You start realizing it’s not just you feeling sorry for yourself.”Myers expects around a third of those victims to be in attendance Saturday, joining her in an effort to combat FA and inch closer to a cure for families facing the same predicament as hers.“If we can meet the same goals as last year, I will be very happy,” said Myers. “I’m grateful for all of the support.”By hosting the event, another one of Myers’ goals is to educate the public about FA.“There will be signs along the route with facts,” she added.Myers, whose family lives in Troy now, graduated from Warrenton High School and says she still feels very much a part of this community.She maintains her ties through her job at Tri-County Agency, and Saturday’s event will begin at the United College Methodist Church, where she and Jeff were married.Festivities at Slim’s Journey will begin at 7:45 a.m., with the race starting at 8 a.m. Awards will be given at 8:45 a.m.Family Begins Journey of Hope