A 50 state running quest to fight a rare disease - KULR8.com | Montana's News Leader | Billings, MT

A 50 state running quest to fight a rare disease

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MISSOULA -

Laura Edwards once ran a half marathon blind folded in less than two hours.

And now she is on a 50 state running quest to honor her sister who is dying of a rare disease, batten disease.

Missoula is the 18th state that she has raced in on her quest.

Laura’s sister is named Taylor and she is 18 years old.

Taylor has lost her vision and ability to speak and walk.

Laura runs for her sister and writes "4 Taylor" on her arm before every race.

Laura said, "And I just look down at my arm. It is always great reminder of how much pain and suffering my sister endures every day. I understand that batt disease is a genetic disease that I could just have easily gotten and what I have to deal with everyday does not even compare to what my sister has to face so it gets me to go that extra mile."

Taylor was a runner first, which then inspired Laura to pursue running.

Taylor used to be part of a local running group in Charlotte, North Carolina where she currently lives.

She managed to run two 5ks after going blind with her disease.

Taylor's strength and will gives Laura the motivation to finish her 50 state running quest even when she feels weak herself.

Laura said, "I got to remember that this is not about speed. This is about finishing the race. This is about sharing my sister Taylor's story and helping the millions of Americans who are fighting this rare disease."

Laura feels relief and sadness after each race and said that each race is so special in its own way.

Laura said she will remember these fifty race days for the rest of her life.

Laura does not have plans for her next race yet, but she has a lot of exciting things coming up.

She just signed this week to publish a memoir and has a Ted Talks coming up in Charlotte, North Carolina.

She also co-founded a charity inspired by her sister called Taylor’s Tale, to help build a better future for children and others fighting a rare disease.

If you would like to donate or learn more about her cause please visit Taylor’sTale.org

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