They say the journey of 1,000 miles begins with a single step.
"We're once again asking the community to lace up its shoes and help us beat INAD," said John Galer of Alexandria, VA.
Galer and his wife, Emily, are once again planning this year's A Grace-Filled Journey 5K and one-mile fun run on Saturday, Sept. 2, in Hillsboro to raise money for INAD research at Washington University in St. Louis, MO.
Its namesake, Grace Herschelman, who is the five-year-old daughter of Kyle and Mary Herschelman of Hillsboro, continues to battle the rare genetic condition, INAD (infantile neuroaxonal dystrophy). It affects about 50 children worldwide, and leaves them unable to walk or talk. Most children with INAD do not live to see their tenth birthday.
"Over the past two years, we've seen a regression in Grace's condition for sure," said her mom, Mary. "She is no longer able to sit independently or hold her head up. But despite all her limitations, she still has a beautiful smile that lights up the world."
This year's course begins at Hillsboro High School and will follow the same route as the inaugural Grace Race in 2015. Pre-registration officially opened on July 1, and will continue through Aug. 21. Race day registration will be available, but there will be no guarantees on T-shirts.
Registration is $25 for adults for both the 5K and one-mile courses and $10 for kids, ages 12 and under. Virtual participation is also available once again, and the cost is $30 for adults and $15 for children, ages 12 and under.
"We lowered the price for registration for children this year because we wanted families to feel like they could participate together," said Mary Herschelman.
In addition to the fun run, this year's event includes many family friendly activities, offered at no charge. Some activities are still being planned, but there will be face painting with the Hillsboro High School Art Club, balloon animals with Professor Longhair, children's activities with the Hillsboro Area Hospital Junior Board and a visit from Ronald McDonald, compliments of Litchfield McDonald's. Members of the Hillsboro Sertoma Club will also be grilling pork patties for lunch.
"We want this to be a celebration of Grace and her life," said Emily Galer. "We hope everyone will come out and join us."
Two years ago, the event raised more than $25,000 for INAD research with Dr. Paul Kotzbauer at Washington University. More than 400 people participated in the inaugural A Grace-Filled Journey 5K, with another 100 participating virtually in more than 20 states and five countries outside the U.S.
"This year, one of our goals is to raise more awareness about INAD, so we've set an even bigger goal," said Mary Herschelman. "We would like to see virtual participation in all 50 states this year. So we hope everyone will help us beat INAD, even if you can't join us in Hillsboro."
Pre-registration forms are now available at The Journal-News offices in Hillsboro and Litchfield, as well as Fusion Fitness and Aquatics in Hillsboro and Fit-to-Go in Litchfield. Online registration is available at www.facebook.com/GraceFilled5K.