Fairfield Ledger
http://fairfield-ia.villagesoup.com/p/1064236

Neighbors Growing Together | Dec 20, 2014

Man walks across country to find cure

By DIANE VANCE | Oct 03, 2013
Noah Coughlan, 29, of California, stops Wednesday along an Iowa road to meet Tammy Mohr for the first time after three years of email and phone contact. Mohr’s grandson, Taylor Mohr, is one of the children with Batten disease for whom Coughlan ran across the country in 2011. Taylor died last week. “My heart sank last week when I heard the news about Taylor. I was looking forward to meeting him. I was in Nebraska walking down the road when I got a phone call from Tammy. My heart goes out to the Mohr family and to the other families who have recently lost their children to the cruel Batten disease,” Coughlan wrote on his blog. His jogging stroller with the American flag travels with him as he runs across country.

His Facebook cover photo is reminiscent of Forest Gump running across America, and that is no accident; Noah Coughlan, 29, of Vacaville, Calif., is more than halfway through his second coast-to-coast run.

Unlike the movie character Forest Gump, Coughlan does not have fellow runners and for this 2013 run, he doesn’t even have a support vehicle.

In his first run across America in 2011, he had a support vehicle. Now, running in Iowa today from Creston to Osceola, Coughlan is running solo, pushing his gear in a jogging stroller, which also holds a large American flag.

Coughlan does have supporters and sponsors behind him, just not on the road. He’s running to raise awareness, support and donations for research for a cure for Batten disease.

He started his planned 3,100-mile solo run July 27 from Half Moon Bay south of San Francisco, in California. Today is day 69, and he has an end date to finish in Boston in November. This morning, he said he had 37 days to reach Boston.

“I’ll do 35 miles today,” he said by phone as he left a bed and breakfast in Creston. “I’m running for all the kids in the world who have Batten disease.

“I say there’s no cure yet … research is ongoing,” said Coughlan. “This is caused by a gene.”

A news release sent from Coughlan’s support team says: Batten disease is a genetic neurological disorder that affects children and adolescents. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and unable to communicate. It does not discriminate against age, race, or socioeconomic status. Presently, there is no effective treatment and the disease is always fatal.

Coughlan runs for and is relentlessly dedicated to raising awareness for Batten disease after watching it affect two of his childhood friends, Catie and Annie Allio. Coughlan has raised awareness and educated many through his activism. He has talked with hundreds of parents and met more than 40 families dealing with Batten disease and takes time to meet with as many as possible during each run.

The Wellman family in Waterloo is planning to visit relatives in Fairfield Sunday and meet Coughlan for the first time. Coughlan ran in 2011 for Nick Wellman, now 12, who has Batten disease.

“Nick was diagnosed at 6,” said his mother Jill Wellman. “He has the slow form of the disease. He’s blind now and struggles with cognitive abilities. But he’s still walking most of the time and attends school full time.”

She said her family has held successful golf outing fundraisers the past four years in Waterloo.

“We just had our fourth golf fundraiser Aug. 27, and raised $20,000 for Batten disease research,” said Wellman. “We also support Dr. Steven Gray’s research at the University of North Carolina.

“I really hope the weather allows Noah [Coughlan] to be in Fairfield Sunday so Nick and our family can meet him,” she said. “We’ve talked on the phone and shared emails, but never met him in person. It’s so inspiring that this young man puts aside his life for a year to dedicate toward this disease.”

Coughlan encourages any families encountering Batten disease to contact him; his Facebook page is facebook.com/noahontherun and his website and blog are at http://runcoast2coast.com. Sponsors and others also can make inquiries at info@hitchcockandco.com or 801-369-9364.

“I’m meeting with 10 families along my route in Illinois,” said Coughlan.

Families have sent him T-shirts and bracelets about children with Batten disease.

Coughlan’s first run across America in 2011 made him the 222nd individual to accomplish this feat. When he finishes this year’s run, he’ll be the 27th person to do so twice.

“I ran two marathons before my first run in 2011 and I’ve done two marathons since then, before this run,” he said. “I do walk and run. I’m sometimes on gravel and on shoulders. In Nevada and Utah, I could use the interstate. I’m on Highway 34 across Iowa.

“I’ll have a police escort in Burlington to cross the bridge over the Mississippi River,” he said.

Bad weather has been a factor in his 2013 run.

“If it rains, I don’t have a support vehicle to jump into, I just gotta take it,” he said. “I’m pushing an 80-pound stroller up hills and along gravel. The storm in Colorado shut down my intended route. Because of the flooding, I diverted up through Cheyenne and Laramie, Wyo. I lost some time, or added more miles to the route. It’s now a 3,250 mile run.”

His support team calls ahead to find discount or complimentary lodging for him along his route.

“Sometimes, just the public sees me along the road and offers a place to stay,” he said. “My American flag is drawing a lot of attention. I’m talking with a lot of veterans along the way.”

He has water, some food, a tent, sleeping bag, clothing and spare shoes in the stroller.

“I camped out in the Salt Flats in Nevada and Utah,” he said. “That was kind of rough.”

In addition to Batten disease, Coughlan is running in memory of his friend, the late Ryan Rossi, founder of 20K Watts.

“Ryan is my age, and he died of lymphoma, I’m running for him to help keep his dream alive,” said Coughlan. “20K Watts is providing solar lanterns to people in extreme poverty in Central America, to replace the use of kerosene.”

Coughlan said his 2011 coast-to-coast run raised at least $50,000 in support of research of Batten disease.

“I run for so many organizations I don’t know how much money is raised in various parts of the country from my run,” he said. “It doesn’t go through me.”

Physically, it took him about a month to recover from the more than 3,000-mile run across America two years ago.

“So much happens in 3.5 months, meeting people, hearing stories and experiencing so much in various states and towns, it took about a year for me to process all that,” said Coughlan.

On his blog, Coughlan said he spoke Wednesday with Kathy Allio, the mother of Catie and Annie, the two sisters with Batten disease from Vacaville, who were his initial inspiration for running. Catie Allio died at age 22 on May 14, 2012. Annie Allio celebrates her 15th birthday Friday.

Also Friday, Coughlan will be calling in to his hometown Vacaville radio station KUIC 95.3 FM at 7:50 a.m. Pacific time or 9:50 a.m. here in Iowa. It can be heard live online at http://www.kuic.com.

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