Runner to visit girl in Clinton with rare disease

Published: Thursday, Oct. 10, 2013 11:18 a.m. CDT

CLINTON (MCT) — Noah Coughlan, a 29-year-old California man, is running across the country and, on Friday in Clinton, he will meet a reason for his odyssey.

Mabel Larson, a 3-year-old Clinton girl, has Batten Disease, a genetic neurological disorder that may cause mental impairment, seizures, loss of sight and motor skills.

While rare — affecting two to four of every 100,000 children born in the United States — the disease has no cure and is fatal, according to the Batten Disease Support & Research Association.
Coughlan is running across the country to raise awareness of Batten Disease after watching it affect two childhood friends.

Along the way, he is meeting families affected by the disease and, on Friday, he will meet Mabel and her mother, Ramee.

He also will speak at Clinton Junior High School at 2:30 p.m. Friday.

"Mabel was diagnosed a year ago, two days before her second birthday, after searching for a diagnosis since her first seizure at 2 weeks of age," Ramee Larson said.

Before the diagnosis, Larson formed Mabel's Able, a group dedicated to being a voice for families whose children are undiagnosed or have rare diseases.

"When Mabel was diagnosed with Batten Disease, I was eager to raise awareness, and what Noah is doing is amazing," she said.

"He is making people aware of the issues that are most important -- lack of funding for research and no cure for our dying children. I am incredibly thankful for his passion for children like Mabel and his ability to carry out such a life-changing mission."

Coughlan — whose website is www.runcoast2coast.com — left Half Moon Bay, Calif., on July 27. He hopes to end his run in Boston on or around Veterans Day, Nov. 11.

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