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Abby Ter Haar has lived without eyebrows, eyelashes and all of her body hair since she was 6 years old. This 13-year-old Episcopal eighth-grader suffers from alopecia areata, an unpredictable autoimmune disease resulting in total hair loss, and it affects 5 million Americans.

Abby’s mother, Wendy Ter Haar, was brushing her daughter’s hair before school one morning when she noticed clumps coming off in the brush. Within weeks all of Abby’s hair had fallen out.

“It’s a very emotional disease,” says her father, Brian Ter Haar. “But she’s a tough kid. She could wear a wig everyday, but that’s just not Abby’s style. She doesn’t hide from anything.”

In fact, the Ter Haars have become alopecia activists. For six years Abby and her parents have raised more than $200,000 for research through a charity golf tournament, Links for Locks. This year they’ve decided to host an event to showcase Abby’s talent for long-distance running: the Tortoise & Hair 5K and 1-Mile Run/Walk.

“As parents, we find ourselves challenged daily with helping our child maintain her dignity and self-confidence. While we cannot grow hair for Abby, we can raise funds to foster research that will one day find a cure or even an effective treatment.”

The event is March 3. tortoiseandhair5k.org.