Mt. Vernon Register-News
February 21, 2015
By Phillip Hamerski
MT. VERNON — Bernie Lillick and Noah Coughlan have forged an unlikely friendship.

Lillick is an 87-year-old retired pilot from Mt. Vernon and Noah Coughlan is a 31-year-old marathon runner from California, but fate brought them together to help start one of the most renowned rare disease advocacy runs in the United States.

According to Coughlan, the cause started because he grew up next to a family with two daughters who were diagnosed with Batten disease. The disease has no known cure.

“It bothered me there was this rare disease with no known cure,” Coughlan said. “I felt like those girls needed a voice, somebody had to do something.” In 2011, Coughlan embarked on his first ever cross-country run advocating for Batten disease. He ran approximately 2,500 miles beginning in San Diego, Calif., and ending in Jacksonville, Fla.

“The first run went from just an idea to a reality,” Coughlan explained. “I’m not a doctor, I’m not a scientist, the only thing I could contribute was that I’m an athlete with two legs and a voice.”

Along the way, Coughlan met with dozens of families and children affected by Batten disease throughout his 132-day coast to coast journey, while also completing numerous media interviews.

In 2013, Coughlan again set out to run across America to raise awareness for Batten disease.

He embarked on a 3,100-mile cross-country run beginning in Half-Moon Bay, Calif., and ending in Pleasure Bay in Boston, Mass.

By this time, Coughlan’s cause had garnered a lot of media attention and Lillick had caught wind of it.

Lillick is a former pilot and was very active in the Angel Flight program, in which pilots volunteered their time to fly children with rare diseases to hospitals for treatment.

Through the connection of a former Batten disease patient’s mother, Lillick heard of Coughlan’s cause and was very eager to get involved.

“One day I got a call from a guy named Bernie,” Coughlan said.

From that day on, Lillick co-piloted Coughlan’s 2013 marathon.

They spoke every day on the phone during the 108-day journey.

Lillick co-piloted by figuring out where Coughlan was at and where he was headed that day.

Lillick would call ahead to the city where Coughlan was going and make hotel reservations for Coughlan. He would also call every news media outlet he could get ahold of to set up interviews for Coughlan to help spread the word.

“We formed an incredible bond,” Coughlan explained. “I couldn’t have done what I did without Bernie.”

“It’s not about us, it’s about finding a cure for Batten’s disease,” Lillick said.

At the end of February, Coughlan will embark on yet another run across America to advocate for rare disease.

Coughlan realizes that at his age, this may be the last time he can do something like this.

“I have another opportunity to do this run,” Coughlan said. “I’m just out here to educate the public so that we can start talking about rare disease in a healthy manner.”

This will mark the third time in five years that Coughlan has made a cross-country run.

“I’m from the Bay area so I always joke that if the Giants can win three World Series in five years than I can make this run three times in five years,” Coughlan joked.

On Feb. 28, which is International Rare Disease Day, Coughlan will start his 2015 campaign for Run for Rare beginning at the Statue of Liberty in New York and ending in San Diego where it all started.

“I’m just trying to do something big to bring attention to something rare,” Coughlan said.

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