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Bicycling for cystic fibrosis

Jerry Cahill, a 62-year-old who has battled cystic fibrosis since he was 10, embarked on a 100-mile bike ride from Cohen Children’s Medical Center to Montauk — the first of 50 planned “century rides” that will take him to every state.

Jerry Cahill has a lively spirit. Two days after turning 62 years old, he began a mission that he hopes inspires children dealing with the same condition he has.

Mr. Cahill suffers from cystic fibrosis (CF), a genetic disease that affects more than 30,000 people in the US and 70,000 worldwide. On June 29, he kicked off a 100-mile bike ride from Cohen Children's Medical Center to Montauk. And he plans to complete a "century ride" in each of the 50 states "as a personal goal and a challenge."

His goal: prove to children living with CF and their parents that their lives aren't over.

"People with CF are normal," Mr. Cahill said. "They can do things, and it's important to believe that you are normal."

An active life with cystic fibrosis

Mr. Cahill is an optimist. Regardless of the situation, he believes "there is nothing you can't achieve." He's living proof that anything is possible for someone with CF.

Diagnosed at age 10, Mr. Cahill began treatment at Cohen Children's and continued as a patient there for many years. CF is a progressive, genetic disease. Many endure tenacious lung infections that can limit the ability to breathe.

When Mr. Cahill was diagnosed, the life expectancy for a child with CF was between 16-18 years. His parents, however, thought differently. They decided that if their son wasn't destined for a long life, he would maximize his time with his brothers, playing football, basketball and baseball, as well as running and pole vaulting.

The plan worked. And Mr. Cahill is now a powerful advocate for exercise, crediting his pole vault experience and physical fitness regimen with his longevity. His documentary, Up for Air, followed his journey through training, treatments and a double lung transplant - all with the goal of shedding new light on the prospect of living with CF.

Bringing CF awareness

In celebration of his 62nd birthday on June 27, Mr. Cahill decided that the century rides would be the perfect way "to bring awareness to the disease and to show people with CF that everything is possible."

He is an ambassador for the Boomer Esiason Foundation, an organization that raises money and awareness for CF. Prior to his ride to Montauk, Mr. Cahill was introduced to the well-wishers by Katherine Sneddon, a 23-year-old CF patient who is currently pursuing an advanced degree in physical therapy. Much like Mr. Cahill, Ms. Sneddon maintains that exercise contributes greatly to her positive mental attitude.

"Exercise is not only vital to staying healthy, but it also helps me stay engaged in my life," said Ms. Sneddon. "I'm so much more than a person with an illness. I'm an athlete."

The Levittown resident explained how a life spent playing soccer and lacrosse, and running track has kept her healthy.

"Like Jerry, it's helped me fight infection, clear my lungs and stay positive," she said. "I run marathons and participate in 5-borough bike tours. For me, exercise is medicine."

Joan DeCelie-Germana, MD, the pediatric pulmonologist who treats Ms. Sneddon at Cohen Children's, said that the hospital's Cystic Fibrosis Center has been providing comprehensive care to CF patients from infancy to adulthood for almost 50 years.

"The hospital is accredited by the National Cystic Fibrosis Foundation, a designation reserved for those centers that meet the highest standards in cystic fibrosis diagnosis, treatment, education and research," she said. "We are also designated as a research site for the CF Therapeutics Development Network - the largest CF clinical trials network in the world.

Crossing the finish line in Montauk

Mr. Cahill, who bikes about 12 miles an hour, expected to arrive in Montauk about about 8 p.m. As he strapped on his bike helmet and prepared to start the trip, he had one final thought for well-wishers.

"I'm not running a race," he said. "I expect that these rides will take me through 2018 and 2019. My goal is to let others know that you can succeed at anything if you believe."

"People with CF are normal. They can do things, and it’s important to believe that you are normal."
— Jerry Cahill
Cohen Children's Cystic Fibrosis Center treats all aspects of the disease.
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