• Family Focus: Group to run blindfolded at 5K to raise awareness for rare disease

    By: Natalie Pasquarella

    Updated:

    CHARLOTTE - A woman has an unusual plan to raise awareness about the rare disease her sister is battling.

    Laura Edwards and local families will run in Charlotte’s Thunder Road 5K on Saturday blindfolded.

    Edwards is an avid marathon runner, but it’s a different course when you’re running it blindfolded.

    “I’ll wear (the blindfold) again this Saturday,” Edwards said.

    Her 16-year-old sister Taylor’s name is on it, and Edwards said it’s the reason she runs. Taylor also loved the sport. She suffers from a rare, debilitating disease called Batten disease, which causes blindness.

    “It causes cognitive issues. It steals their ability to walk. Eventually they lose their ability to speak,” Edwards said.

    Edwards co-founded the nonprofit Taylor’s Tale to Find a Cure shortly after her sister was diagnosed at 8 years old. Even after losing her sight Taylor still continued to run.

    “The moment that I watched Taylor cross the finish line of the Thunder Road 5K in 2008, was probably the most inspiring moment of my life and that moment, I decided I wanted to run for her,” Edwards said.

    Edwards ran the Thunder Road half marathon last year blindfolded, and cheering her on were members of Playing For Others, a Charlotte nonprofit that builds teen leadership skills.

    The teens were so inspired they’re running the race themselves this year, tethered to adults, in blindfolds.

    Executive Director Jen Band said it’s about raising awareness in numbers.

    “One person can make an impact, can make a difference. A mass of us can make a huge impact and a huge difference,” Band said.

    Anna Harden with Playing For Others has enjoyed practicing at Freedom Park.

    “The bungie cord is important because you can kind of feel when I want to pull you this way, or if we’re going around a curve,” Harden said.

    She’s excited to support Taylor’s Tale, and Edwards mission to help her sister and others suffering.

    “They have such a positive attitude,” Harden said. “It’s never about the disease that Taylor has, but it’s about they’re close to finding a cure and how finding a cure is going to happen.”

    Taylor’s Tale is currently funding research on Batten disease at the University of North Carolina Chapel Hill.

    Click here to learn more about Taylor's Tale.


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