Run to the Light

After college, Laura had a great job in marketing and a loving fiancé, and she enjoyed living in her hometown of Charlotte, North Carolina, so she could watch her seven-year-old sister Taylor grow up. After Taylor misjudged a set of stairs at the State Fair, the family took her to the doctors and learned the shocking news: Taylor had Batten disease. This rare, fatal, genetic disease causes seizures and the loss of the ability to walk and talk. Laura thought she’d get to watch her baby sister grow up, but instead she’d get to watch her die. Laura threw herself into researching, support, and advocacy. She founded Taylor's Tale with her mother and friends—a charity that has so far raised ＄1 million for medical research and inspired a law establishing the nation’s first rare disease advisory council in North Carolina.