Cystic fibrosis (CF) is a chronic life threatening disease. The need here is to supplement traditional medical treatment of CF with ongoing recreational exercise. Individualized Recreation Grants, coupled with mentoring or peer support, offers exercise as a supplemental means of airway clearance and expansion. Additional benefits from the exercise and mentor support address the psychological and social struggles that can contribute to a patient's non-compliance of medications and/or respiratory physical therapy. Emotional and psychosocial reasons such as denial of disease severity and feelings of resentment, anxiety, depression or embarrassment associated with chronic illness negatively affect traditional treatment adherence.
The Cystic Fibrosis Lifestyle Foundation (CFLF) was founded in 2003 by Brian Callanan. Diagnosed with CF at birth, Brian knew from an early age that he wanted to help others who struggled with the challenges of life with CF. Through his personal experience he learned the importance and value of exercise, recreation and positive mindset for his health. Brian had the vision and determination to learn from his life experiences and challenges, and create an organization that would benefit others. Since 2007, the CFLF continues today its primary role of awarding Recreation Grants to CF patients. With the vision of "Living Stronger! Living Longer!" Brian aims to bring greater focus to the empowerment and success of those living with CF. Brain’s story and the path to creating the CFLF was not always easy.
As a teenager, Brian faced his first hospitalization with a CF exacerbation that resulted in pneumonia. In the prior months, depression had overcome Brian resulting in months of counseling. He participated in these sessions willingly and with interest to learn about more about himself and his CF. He learned through the counseling that he often put his social life and desire for friends before his own well-being. He did not realize how isolated he felt, thinking his friend's could not relate to his thoughts of mortality and longevity. Also, Brian did not feel as though his parents would understand the difficulties he was experiencing and he did not want to burden them with his depression.
In this process of facing difficult realities, Brian's CF required hospitalization for what he now realizes was physical neglect, resulting from his emotional pain. Part of the gradual realization for Brian was that since he was able to hide his CF physically (especially as a less severe case), he was also psychologically hiding his emotional pain, fear and loneliness associated with his disease.
The two-week stay was difficult, spanning his 17th birthday, postponing his drivers license test and missing the beautiful Spring weather he could see through the window. But more importantly, it was his first experience of accepting the physical and emotional reality of his disease. Following the 14-days of IV antibiotics, Brian missed another four weeks of school while trying to regain the stamina lost during the hospital stay. When he returned to school he still felt socially isolated, experienced hearing damage and had difficulty re-engaging with his peers and school work. This challenging experience was the Wake Up Call for Brian. He vowed to himself to never get to that point of self-neglect again
In adolescence Brian excelled in skiing. He participated in weekly trips to the Catskill Mountains in New York, eventually becoming the Co-President of the school Ski Club. On the slopes Brian was not only able to find serenity and the adrenaline of personal challenge, but also found he could keep up with his peers and often surpass them. The successes and achievements on the slopes were the foundation for the concept and ultimate development of CFLF.
Brian attended St. Michael's College in Vermont, where he attained a BA in Psychology and Masters in Education. The many friendships that were forged through skiing, continued beyond the Winter months into activities of hiking, swimming, playing frisbee and sailing. Through the companionship and trust that evolved in those relationships, Brian's dealing with CF began to transform as he found the self-assurance to openly discuss his treatments, risks and challenges of the disease.
In 1996, Brian pursued a semester abroad to seek out the adventure of Australia and the Aboriginal culture. It was a challenging task at that time to ship bulky medical equipment through customs, research and prepare for electrical adaptations, and find a local Australian pharmacy to provide medications. Upon successful completion of the semester in October, he undertook a six-week adventure of the Outback. Traveling and backpacking across Australia with no access to any of his medical equipment as he explored the Northern Territory, the Simpson Dessert, Ayers Rock, Tasmania on through Melbourne and a layover in Hawaii.
Despite his fear of getting ill while traveling and needing to go home early and sick, Brian pushed himself with physical activities to open his airways, make him cough, and clear the daily congestion. The extreme experiences of hiking in the dessert ranges or on the snow-capped mountains of Tasmania, and swimming in crocodile waters, kept Brian healthy!
Upon his return home, his follow-up visit with the doctor revealed his lung function scores had increased by 10% from before the trip. The results fortified his exhilaration from such accomplishments in this 'Outback' experience, and brought Brian a new level of empowerment over his cystic fibrosis.
The following year, Brian wrote a Psychology term paper titled: "A Psychosocial Autobiography: Cystic Fibrosis in Mind and Body". This self-evaluation. revealed significant gaps in understanding how to deal with certain aspects of living with CF. Dealing with CF had always been all-things physical, but there was no guidance on how to deal with the psychological, social or professional life situations. Also lacking was of an awareness of how lifestyle choices could impact acceptance, adherence and overall success in managing CF effectively.
Brian explored graduate programs focused on Behavioral Medicine and Kinesiology with hopes of creating research based evidence on the importance of lifestyle choices. With advice from his CF physician in New York City, Brian realized that instead of research, he could create a program to help encourage others with CF to experience and benefit from an active lifestyle, including the psychosocial supports (friends) that developed through those activities.
Subsequently, Brian seized the opportunity to begin the process of incorporating the CFLF, and obtained a 501(c)3 non-profit status in 2003. He attended non-profit courses to help guide him in the formation of the organization. From 2004 to 2008 Brian directed a Parish Outreach Center in Burlington, VT. This Executive Director position included managing a program of direct financial assistance for basic human needs, and gave him the inspiration and model for providing direct financial assistance to people living with CF across the country.
Initially Brian volunteered his time to generate almost $150,000 in grants and donations for this cause. Almost $60k of this resulted from his completion of a five-week awareness/fundraising bicycle ride of over 2000 miles from Canada to Key West in 2006.
These funds were immediately put to use in awarding the first CFLF Recreation Grants in 2007, and the organization was off and running. CF Recreation Grants are provided nationally on an individual basis to directly assist people living with CF with the costs of exercise-based recreation activities as a form of physical, psychological and social therapy. This preventative and proactive approach to living with CF is increasingly needed as the population of CF patients living into adulthood continues to grow.
In January 2008, CFLF received renewable funding earmarked to support a full-time Executive Director. Brian now works full-time dedicated to growing the organization to new levels, and helping improve the quality of life for people with CF who deal with the same struggles he has faced throughout his own life to and to accept those challenges with a new sense of hope and inspiration!
With the vision of "Living Stronger! Living Longer!", Brian aims to bring greater focus to the empowerment and success of those living with CF.
Initially the CF Recreation Grant program was targeted to adolescents and young adults, as Brian found this period of life to be particularly important on shaping the behaviors and choices a person would learn to make as an adult becoming responsible for their own care. He believed that this awkward and difficult time of life could be extremely detrimental in someone's self esteem and perception in learning to hide from their CF (as he did), or to be proud of the amount of effort, discipline and strength required to not only stay healthy, but to also keep up with peers physically. As a metaphorical traffic circle, infusing a CF Recreation Grant could potentially alter the life course of someone with CF, allowing them to identify a value added of "What I GET to do because of my CF" as opposed to the burdensome "What I MUST do because of my CF." Brian's belief that even a small grant in the form of an award could change the trajectory of a person with CF facing adulthood from a downward slide to an uphill climb.
After the first few years of awarding CF Recreation Grants, it became increasingly evident that parents of young children or siblings with CF were often struggling to afford exercise based recreation after monthly insurance premiums and co-pays, nutritional supplements, and other associated medical costs. The realization of financial need was coupled with the important fact that the earlier behavior patterns around exercise were introduced to someone with CF, the better. The youngest CFLF grant recipient was only 8-months-old and did a mother-daughter swim class.
Adults with CF also began asking for assistance. It was also apparent that as people were getting older with their CF, it was progressively harder to maintain a full time job with good benefits, and incomes would become very limited with reliance on social security or disability income. Still faced with high expenses related to out of pocket expenses of both CF and life in general, many adults could not afford any added expense, even for exercise that could have such physical and mental benefit for them.
Eventually the CF Recreation Grant program was opened to patients of all ages. In the early years of the program, limited awareness of the resource allowed for close to 100% of requests to be approved. In the past few years, as awareness of the CFLF has grown tremendously, so has the volume of requests for help. The CFLF strives to award $10,000 per month in Recreation Grants, but finds that is now supporting less than half of the applications that are received. It is the aim of the CFLF to one day be able to financially support closer to 100% of requests again.
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