Thursday, September 18, 2014
FAIRFIELD-SUISUN, CALIFORNIA
99 CENTS

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 ithompson@dailyrepublic.net. 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.
LEAVE A COMMENT

Discussion | 5 comments

The Daily Republic does not necessarily condone the comments here, nor does it review every post. Read our full policy

  • 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!

    Reply | Report abusive comment
  • 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

    Reply | Report abusive comment
  • Kene WinstonJanuary 22, 2014 - 8:36 pm

    talk about amazing&inspirational

    Reply | Report abusive comment
  • 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

    Reply | Report abusive comment
  • 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

    Reply | Report abusive comment
.

Solano News

 
Theatre DeVille in Vacaville closes

By Barry Eberling | From Page: A1, 15 Comments | Gallery

 
Focus on school attendance now, always

By Mayrene Bates | From Page: A2, 1 Comment

 
Lunafest returns to Fairfield in November

By Susan Hiland | From Page: A3

Pepperbelly’s for sale

By Ryan McCarthy | From Page: A3, 4 Comments

 
Jury selection begins in 2011 Fairfield murder trial

By Jess Sullivan | From Page: A3

Seniors get help at Kroc Center health fair

By Barry Eberling | From Page: A3 | Gallery

 
Drug court success stories tell their tales

By Jess Sullivan | From Page: A3 | Gallery

Suisun City Senior Center seeks holiday donations

By Susan Hiland | From Page: A3

 
Weather for Sept. 18, 2014

By Daily Republic | From Page: B10

 
Fairfield police log: Sept. 16, 2014

By Susan Hiland | From Page: A10

Suisun City police log: Sept. 16, 2014

By Susan Hiland | From Page: A10

 
.

US / World

Emotions mount on final day of Scottish campaign

By The Associated Press | From Page: A1

 
Maps provide early warning of California fire risk

By The Associated Press | From Page: A4

More than 2,000 homes threatened in California fire

By The Associated Press | From Page: A4, 1 Comment

 
NASA’s Maven spacecraft reaches Mars this weekend

By The Associated Press | From Page: A5

US military role in Iraq raises combat questions

By The Associated Press | From Page: A5

 
Police: Ambush suspect was military re-enactor

By The Associated Press | From Page: A5, 1 Comment | Gallery

House grudgingly approves arms for Syrian rebels

By The Associated Press | From Page: A5, 2 Comments

 
Ex-VA doctor: Phoenix report a ‘whitewash’

By The Associated Press | From Page: A5, 1 Comment

School district police stock up free military gear

By The Associated Press | From Page: A5, 4 Comments | Gallery

 
Doctor says Toronto Mayor Rob Ford has cancer

By The Associated Press | From Page: A6

US scientist: Ebola unlikely to become airborne

By The Associated Press | From Page: A6

 
Liberia president praises US for Ebola help pledge

By The Associated Press | From Page: A6

Obama reaffirms opposition to US combat in Iraq

By The Associated Press | From Page: A6, 1 Comment

 
AP Interview: Iraq premier says no foreign troops

By The Associated Press | From Page: A6, 1 Comment

.

Opinion

 
Give new crime report a chance

By Kelvin Wade | From Page: A7, 17 Comments

 
Homeless find welcome in Vallejo

By Letter to the Editor | From Page: A7, 7 Comments

 
.

Living

Today in History: Sept. 18, 2014

By The Associated Press | From Page: A2

 
Community Calendar: Sept. 18, 2014

By Susan Hiland | From Page: A2

Horoscopes: Sept. 18, 2014

By Holiday Mathis | From Page: A9

 
My brother fails to make an effort to when it comes to my kids

By Kathy Mitchell and Marcy Sugar | From Page: A9

.

Entertainment

TVGrid

By Daily Republic Syndicated Content | From Page: B4

 
U2 returns to iTunes Top 100 — 26 times

By Los Angeles Times | From Page: B4, 1 Comment

Directors Guild finds TV diversity hiring stalled

By The Associated Press | From Page: B4

 
.

Sports

Rodriguez gets 1st MEL soccer win since return to league

By Daily Republic staff | From Page: B1

 
Giants snap tie in 9th, beat Arizona to narrow gap in West to 2

By The Associated Press | From Page: B1

 
49ers’ Kaepernick fined for inappropriate language

By The Associated Press | From Page: B1, 4 Comments | Gallery

Barry Bonds appeal heads back to court

By The Associated Press | From Page: B2

 
NFL, union agree to new drug policy, HGH testing

By The Associated Press | From Page: B2

Raiders rookie Derek Carr focuses on job at hand

By The Associated Press | From Page: B2 | Gallery

 
Pegulas’ bid to buy Bills OK’d by NFL committee

By The Associated Press | From Page: B2

FSU benches Winston for 1st half of Clemson game

By The Associated Press | From Page: B2

 
Umpire West suspended 1 game for grabbing jersey

By The Associated Press | From Page: B2

After making ‘mistake,’ Vikings bench RB Peterson

By The Associated Press | From Page: B2

 
Sharks sign D Braun to 5-year, $19 M extension

By The Associated Press | From Page: B2

Rockets acquire Jason Terry, picks from Kings

By The Associated Press | From Page: B2

 
Panthers remove DE Greg Hardy from active roster

By The Associated Press | From Page: B2

.

Business

Fed signals plan to keep key rate at record low

By The Associated Press | From Page: B5

 
Brown signs ride-sharing insurance legislation

By The Associated Press | From Page: B5

US homebuilder confidence soars in September

By The Associated Press | From Page: B5

 
Anthem, hospitals join to offer new insurance plan

By The Associated Press | From Page: B5

Drag queens dress down Facebook over names

By The Associated Press | From Page: B5, 1 Comment

 
Wells Fargo pays $290,000 in sex harassment case

By The Associated Press | From Page: B5

.

Obituaries

Margaret King

By Susan Hiland | From Page: A4

 
.

Comics

For Better or Worse

By Daily Republic Syndicated Content | From Page: A8

 
B.C.

By Daily Republic Syndicated Content | From Page: A8

Garfield

By Daily Republic Syndicated Content | From Page: A8

 
Frank and Ernest

By Daily Republic Syndicated Content | From Page: A8

Rose is Rose

By Daily Republic Syndicated Content | From Page: A8

 
Pickles

By Daily Republic Syndicated Content | From Page: A8

Baby Blues

By Daily Republic Syndicated Content | From Page: A8

 
Beetle Bailey

By Daily Republic Syndicated Content | From Page: A8

Peanuts

By Daily Republic Syndicated Content | From Page: A8

 
Blondie

By Daily Republic Syndicated Content | From Page: A8

Zits

By Daily Republic Syndicated Content | From Page: A8

 
Dilbert

By Daily Republic Syndicated Content | From Page: A8

Wizard of Id

By Daily Republic Syndicated Content | From Page: A8

 
Sally Forth

By Daily Republic Syndicated Content | From Page: A8

Baldo

By Daily Republic Syndicated Content | From Page: A8

 
Get Fuzzy

By Daily Republic Syndicated Content | From Page: A8

Sudoku

By Daily Republic Syndicated Content | From Page: A9

 
Bridge

By Daily Republic Syndicated Content | From Page: A9

Crossword

By Daily Republic Syndicated Content | From Page: A9

 
Cryptoquote

By Daily Republic Syndicated Content | From Page: A9

Word Sleuth

By Daily Republic Syndicated Content | From Page: A9