All in for CF | Voices of CF
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.
I’ve always
wanted to give
people the power
to say ‘I can.’
BRIAN CALLANAN
EXECUTIVE DIRECTOR, CFLF
B
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.
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rian 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 40. “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.”
LEARN MORE ABOUT
THE CYSTIC FIBROSIS
LIFESTYLE FOUNDATION:
www.cflf.org
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.”
S
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ince 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.”