Man ran across US, twice, to help battle rare disease

By From page A1 | January 22, 2014

Noah Coughlan_1

Noah Coughlan runs through Utah on his voyage across the country to bring awareness to Batten Disease. (Courtesy photo)

VACAVILLE — When Noah Coughlan jogged into the waters of the Atlantic Ocean while carrying an American flag on Nov. 10, 2013, he became one of only 27 people to run across the United States twice.

But he says that wasn’t the most important part of what he accomplished.

It was helping bring awareness to Batten disease, a rare, degenerative children’s disease, by meeting with the families of those children and using his trek to get media to bring the issue to their communities, “and put a human face on this disease,” he said.

“I did this to be a voice for those children who could not walk, children who could not talk,” Coughlan said.

Two months later, Coughlan, 30, a Vacaville native, is working to put his experiences into two books as well as a film documentary being put together by Luminous Marketing & Media.

“My goal is to give Batten disease more visibility to the decision-makers, both political and medical,” Coughlan said.

The genesis of his runs came after Catie and Annie Allio, the daughters of the youth pastor Coughlin knew as a teenager, were diagnosed with Batten disease. It’s a rare degenerative brain disease that only affects four out of every 100,000 children in the United States annually.

Batten disease is an incurable disease that causes its victims to lose their sight, speech and motor skills, leading to seizures and dementia.

“It eventually leads to them being bedridden and unable to communicate, and it is always fatal,” Coughlin said.

After researching the disease, Coughlan concluded, “the one thing I saw was the need for a massive amount of awareness,” and that running across America was his way of contributing to raising that awareness “by putting a normal life on hold to become a missionary and a messenger.”

Coughlan’s first run in 2011 took him 2,500 miles from San Diego across the country, with a support team in tow, to end on the shore of the Atlantic Ocean four months and 12 days later in Jacksonville, Fla.

Working with the Batten Disease Support and Research Association, Coughlan was able to link up with families affected by the disease who lived near his route. He made more than 100 interviews with TV stations and newspapers. Nearly all also featuring those families and their struggles.

After finishing his run, Coughlan then became a spokesman about the disease, hosting talks and getting involved with fundraisers.

But Coughlan also had what he called “an itch” to do another run, this time across the northern half of the United States to meet with different families and get their stories out through the media.

On July 27, 2013, he set out from Half Moon Bay, aiming for Boston, which was 3,100 miles, three deserts, nine mountain ranges and 17 states away. This time, it was completely solo with only a three-wheel stroller loaded with necessities to keep him company.

He was also armed with a large American flag that he flew from the stroller throughout the entire run “to show my appreciation for the country I am in.”

The second run may have started out all about Batten disease, “but it turned into a story about the American people.”

While crossing the high deserts of Nevada on Interstate 80, an Army convoy driving west spotted Coughlan and “they put on all of their sirens and were waving.”

“It was inspiring, it was amazing,” Coughlan said of the cheering troops.

A Utah man who saw Coughlan on the news, tracked the runner down in the Utah salt flats after stopping at a pizzeria 40 miles away to get the pizza he delivered to Coughlan’s campsite.

A youth football coach spotted Coughlan running by and called him over to the team he was coaching for a playoff game, to give them a pep talk. Coughlan does not know if they won that game.

“There was no shortage of kindness of the American people, and I was witnessing that kindness every day,” Coughlan said of being handed countless bottles of water, food and donations by passers-by. “I learned that people are inherently good.”

When he got to Columbus, Ohio, the headquarters of the Batten Disease Support and Research Association, all the families in the region gathered to put on a dinner for him. “It was exciting,” he said.

He paused during the latter part of his run to pay his respects in Shanksville, Pa., at the United Airlines Flight 93 memorial; in Newton, Conn., the site of the Sandy Hook Elementary School shootings, to talk to high school students there; and at the site of the Boston Marathon bombing.

Boston topped everything off, with an impressive police escort through the city that blocked off intersections while residents cheered for him from the sidewalks.

“I happened to end the run on the Marine Corps’ birthday and Marines from the local recruiting station showed up to salute as I ran into the water,” Coughlan said of the ending that had him take the flag from the stroller and carry it into the Atlantic surf.

This was all accomplished despite close vehicle encounters, hypothermia, weight loss, rain, thunder, frigid cold, heat, hail, tornado activity, dog encounters, bee stings, heat exhaustion, fatigue, high winds, flooding in Colorado, food poisoning and a still-painful hip injury.

Coughlan sums it up simply: He calls it “the most amazing experience of my life.” He has deep appreciation for the people and the Batten disease families “who kept me going.” He also hold close the support he received from Vacaville residents.

“You helped me share with the world why this battle with Batten disease matters,” he said.

Reach Ian Thompson at 427-6976 or [email protected] Follow him on Twitter at www.twitter.com/ithompsondr.

Ian Thompson

Ian Thompson

Ian Thompson has worked for the Daily Republic longer than he cares to remember. A native of Oregon and a graduate of the University of Oregon, he pines for the motherland still. He covers Vacaville and Travis Air Force Base for the Daily Republic. He is an avid military history buff, wargamer and loves the great outdoors.

Discussion | 5 comments

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  • P. J.January 22, 2014 - 8:55 am

    What an incredible man! What an incredible journey! I hope they do make a movie, and tell this story. I wold love to see the story of his life! Thank you!

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  • Deborah GloriaJanuary 22, 2014 - 9:00 pm

    I can't wait for the documentary and book to be released !! I'm so proud of my son Noah, he's such an inspiration and has a huge heart!! Love you!! Mother

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  • Kene WinstonJanuary 22, 2014 - 8:36 pm

    talk about amazing&inspirational

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  • PeggyJanuary 23, 2014 - 7:07 am

    Determined, devoted, unselfish, amazing...the list can go on and on. I am so glad I was there in Boston for the finish to that incredible journey. I think I can speak for all parents of Batten children that we are so proud and extremely grateful for the awareness you created (and continue to create) and for telling the stories of our children. Thank you Noah and thank you to Noah's parents for raising such a wonderful man. Peggy DiCapua - Metro NY/NJ Chapter of Batten Disease Support & Research Association

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  • Bernie LillickJanuary 24, 2014 - 9:04 pm

    This is a wonderful article about Noah's fantastic marathon across America and I can attest to the fact that everything that Ian writes in this article is accurate and true. I was blessed with a chance to work with Noah as a back up helper every day of his journey with TV and magazine Media contacts and hotel and motel lodging reservations. This was a physical and emotional challenge for him beyond description. I can't wait to read his books and see his documentary Bernie Lillick Mt Vernon, Illinois

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