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Brian Callanan's Mission Is to Encourage People With CF to Live Active Lives

 



A decade ago, Brian Callanan had a chance meeting with a college friend who was a serious cyclist. That night, the two hatched a plan to ride down the eastern coast of the United States, beginning at the border between Maine and Canada, all the way to Key West, Florida. Together, they trained for three months, and spent the next five weeks biking the 2000-mile distance, with the aim of raising funds and awareness for the Cystic Fibrosis Lifestyle Foundation (CFLF), the organization Brian had founded to encourage people with CF to live healthy and active lifestyles.

Though they did nearly 50 media interviews along the way, they reached Key West a few thousand dollars in debt. They returned home, and almost gave up on the endeavor when donations starting pouring in. Within months, they had raised more than $60,000, providing enough funding for the CFLF to give out the first of its recreation grants, which are awarded to people with CF to cover the costs of exercise-based recreation activities and to help defend against the physical and psychological challenges of the disease.

Effortlessly cheerful with a contagious smile, Brian speaks excitedly about his organization and the many recipients of CFLF’s grants, which to date have gone to nearly 1,000 people with CF. Helping families affected by CF by promoting physical fitness has become his life’s work, and it is easy to think he has always had such a positive outlook. But he developed his “live stronger, live longer” approach – his organization’s motto – to bring himself out of a much darker place.

I’ve always wanted to give people the power to say ‘I can’. - Brian Callanan, Executive Director, CFLF

Brian grew up in northern New Jersey, the youngest of five boys. His father knew something about handling adversity. His first wife had passed away, leaving him a widower with two young boys. But he remarried, eventually having three more sons with his second wife – Brian’s mother. The oldest of these three additional sons did not have CF, but the two youngest did.

Brian’s older brother was diagnosed with CF at two months old, after spending the entirety of his young life ill. Brian was diagnosed at birth. Doctors told his parents that the life expectancy for their youngest sons was ten years.

“I have great respect for my father,” said Brian, who is now 39. “After losing his wife, he had the strength to carry through and fall in love again, and when he had children he had to deal with both the challenges of CF and the fear of losing more of the people he loved. I can’t imagine the great strength it must have taken my father to cope with that fear. But my parents modeled for us a perspective of living life one day at a time, and living each day to the fullest.”



Thanks in part to his father’s unwillingness to succumb to despair in the face of hardship, Brian experienced much of his childhood as an ordinary one. There were, of course, the regular trips to New York City to visit the CF treatment center, the enzymes he stirred into his applesauce at breakfast, the twice-daily manual chest therapy his parents hired a neighbor to administer, and an ever-present fear of infections. Still, he played sports, horsed around with his four brothers, made friends, and was generally healthy throughout his childhood.

When Brian reached high school, however, he became more aware of the difference between his life and his friends’ lives. He contracted pneumonia, which caused his first CF-related hospitalization.

“I suddenly realized that my friends didn’t have to face the threat of early death, as I did,” said Brian. “I hadn’t been given the tools to cope with the psychological toll of having CF. I didn’t know how to tell a girlfriend about my CF, I didn’t like feeling different, and I didn’t know how to cope with feeling alone.”

His depression worsened, eventually reaching a crisis point. His family, friends and CF treatment team rallied behind him and he fought his way back to health, working with a counselor who helped him realize that, as he puts it, “he had put his health on the backburner, and neglecting it and ignoring it would be deadly.”

Nothing re-engaged him more than playing sports, which both strengthened his physical health and helped him form meaningful relationships and a strong social network, providing him with a sense of empowerment.

Brian joined his high school ski club, eventually becoming president, and moved to Vermont for college, continuing to ski. In his senior year he studied abroad in Australia where he took a backpacking trip across the continent. This “spiritual walkabout journey,” as he calls it, transformed his perspective on living with CF.

Brian felt less afraid. “I just felt so good,” he said. “I felt strong and empowered and was on such a high. I found myself asking, how can I bring this feeling to other people living with CF?” he recalls.

The coping mechanisms he developed to pull himself out of depression ultimately shaped the course of his adult life, and led him to found the CFLF.

“I have come to see the depression I experienced as a blessing in disguise,” he said. “It taught me that dealing with the physical problems of CF is the easy part. It’s finding ways to cope with the psychological impact of CF that is hard. My experience with depression helped me to realize that I wanted to empower people with CF to keep fighting and to never give up.”


Since 2003, the CFLF has granted $500,000 in recreation grants to people with CF, supporting a variety of activities from helping young children with CF take swim lessons to aiding the recipient of a double lung transplant to attend the World Transplant Games in South Africa. For Brian, the ultimate reward is hearing about the impact staying active has on people with CF.

He continues to use the CFLF as a platform to encourage people with CF to push past the perceived boundaries of what they are capable of accomplishing. To fund its grant programs, the organization hosts a number of fundraising event each year, the majority of them fitness-based, including KnockOut CF, a boxing night held at the George Forman Gym in Boston, Champ’s Challenge, a bike ride through Vermont, and Dancing for CF, which is held in Charlotte, NC.

“I’ve always wanted to give people the power to say “I can,”’ Brian said. “I want to help people who are in a much less fortunate position than I am, and encourage them to keep fighting and keep pushing forward until they reach their goals.”

Learn More About The Cystic Fibrosis Lifestyle Foundation

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