Cystic Fibrosis Lifestyle Foundation Improves Patients’ Quality of Life Through Recreational Activities

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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Cystic Fibrosis Lifestyle Foundation

Cystic Fibrosis Lifestyle FoundationResearching and developing therapies to help patients survive cystic fibrosis (CF) remains one of the main goals of a number of CF research centers and biotech organizations worldwide. However, for the Cystic Fibrosis Lifestyle Foundation, an organization founded in 2003, their goal is to address the other pressing need for CF treatment: quality of life for those who suffer from the disease. To this end, the CFLF seeks to assist and educate people who were diagnosed with CF by inspiring healthy and active lifestyles through fitness, exercise, and outdoor recreation activities.

The foundation features several dynamic educational programs, since they believe in educating people with CF on the critical psychological, social, and emotional connections between lifestyle and health. Their work focuses on educating people on what can be done to promote health and avoid illness, as well as to inspire patients to live life to the fullest. The non-profit organization also awards CFLF Recreation Grants for recreation activities, which consists of sports team and league fees, training camps, or sports lessons. Other options include incorporating Peer Support or Recreation Mentors.

“Increased awareness continues to develop around the importance of exercise in managing the effects of cystic fibrosis.  The benefit of being active for people with cystic fibrosis is not only physical, but also impacts self-esteem, empowerment, relationships and emotional well-being — all of which effect the adherence with prescribed medical treatments like chest therapy, nebulizers, and oral medications,” according to the organization’s website. “CFLF believes that when an individual is given the chance to learn what it is like to feel ‘good’ physically, socially and emotionally,  they are more likely to want to take care of themselves.”

CFLF works every year to raise funds for their initiatives and programs. The upcoming “Champ’s Challenge for CF,” which includes a 40-mile fundraising ride for more advanced cyclists, an 8-mile course for recreational riders and families, and a 5k Walk/Run for participants preferring not to ride, will be held at the Basin Harbor Club in Vergennes, July, 20th, in Vermont. The goal is to raise $50,000, and supporters will be able to contribute at the event itself and online as well.

In addition, the CFLF will feature a Breathe Deep event, a social gathering in which every attendee is committed to the importance of having clear and healthy lungs, in both Boston and New Jersey.

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The Foundation was founded and is directed by Brian Callanan, who was diagnosed at birth with CF, in 1976, and wasn’t expected to survive after the age of eight. He is now 38 years old, a snowboarder, sailor, mountain biker, hiker, snowshoe and XC-skiing practitioner, and is dedicated to helping others cope with CF through healthy living. With the vision of “Living Stronger! Living Longer!” Callanan hopes to bring focus  to the empowerment and success of those living with CF, sharing his own path and story.

Callanan experienced severe CF exacerbation and was hospitalized due to a pneumonia when he was a teenager. He developed depression as a result of the illness, and ended up neglecting his own health because of the emotional pain. After weeks of antibiotics and hospital beds, the 17-year-old returned to school and eventually enrolled the St. Michael’s College in Vermont, where he earned a BA in Psychology and Masters in Education.

It was in Vermont that he dedicated himself to skiing, a sport he already tried in his youth, as well as hiking, swimming, playing frisbee, and sailing. He pushed himself in physical activities to help open his airways, cough, and clear the daily congestion associated with CF, thus establishing the lifestyle he leads today. The foundation turned into a natural next step after his experiment on himself, first as a small volunteer organization, and now as a multinational fundraiser.