In November 2014, Grace Herschelman was diagnosed with INAD (Infantile Neuroaxonal Dystrophy), a very rare genetic disorder, affecting about 50 children worldwide. Grace was three years old when she was diagnosed with this disorder, and although she wasn't able to walk independently, she could sit up, use her hands to play and interact with others. In the last few years, INAD has stolen not only her ability to walk and talk, but also her ability to sit independently and hold her head up, limiting her to activities she can do laying down or in her medical stroller. And while INAD has taken so many of Grace's abilities, it hasn't taken her beautiful smile or her enthusiasm for being around those who love her. She loves her friends at preschool, reading books, bubbles, Minnie Mouse, soccer balls, and of course, her favorite stuffed puppy, Bruce. Grace is also quite fond of her new baby sister, Charlotte, who will be joining her at this year's Grace Race.
Shortly after Grace was diagnosed, a handful of INAD families raised more than $250,000 to fund a research study with Dr. Paul Kotzbauer at Washington University in St. Louis, MO. Among those donations was the $25,000 raised at the inaugural Grace Race. Dr. Kotzbauer attended the race with several members of his research team, and they are planning to attend again this year. Dr. Kotzbauer said, "The Kotzbauer Lab has learned a tremendous amount during the first two years of our Infantile Neuroaxonal Dystrophy Research Project. We are grateful for the dedication of all who have joined to support our goal to develop treatments for INAD!”
We will be offering a virtual option, which allows runners/walkers to participate in this event from any location! These participants will receive a race packet in the mail and are encouraged to run/walk from the location of their choosing. We encourage virtual runners/walkers to form groups in their locations for maximum participation and fun.
Together we run for those who can't! Be sure to use the hashtags #GraceFilled5k and #beatINAD.