The month of May is recognized as National Cystic Fibrosis Awareness Month. It is also the month of my birthday. This overlap has always represented something very special, yet ironic to me because for a long time cystic fibrosis (CF) was believed to be the likely cause of my end. I distinctly remember at age 13, when the CF gene was first fully mapped and a cure would not be far off, that I committed to myself to stay healthy enough for long enough to see that cure in my lifetime.

Medical advancements are rapidly changing the horizon of this disease that was supposed to have stunted my life to a quarter of the 42 years I have already lived. Exercise has been a core component of my maintaining lung health, overall physical health as well as mental health.  Knowing the efforts I’ve put into hiking, snowboarding, cycling and swimming have contributed not only surviving, but thriving with CF is something I was compelled to share with others facing CF.

However, what does "awareness" mean? Is it just hearing the words cystic fibrosis? Or is it understanding the genetic lung disease that also affects the digestive system, endocrine system (diabetes), reproductive system, the liver and kidneys? Or is it understanding the lived struggles and challenges faced at times by me and 30,000 others in the US and 70,000 worldwide including chronic anxiety, depression and emotional isolation?

I acknowledge that I will never know what it is like to live the life of a parent with a child fighting for their survival. I will never know what it is like to be a person without CF, standing by the side of someone faced with such potentially lethal challenges. I can only imagine that feeling of “What can I do to help???”

What strikes me most about this rare orphan disease (<200,000 patients), is the frequency of meeting someone with even with three, four, five or more degrees of separation from a person with CF. Why can this tiny population penetrate so deeply into the relationships in our community?

The undying optimism, strength, courage, joy and love that emanate from a person with CF is something that you will never forget. Especially when they are faced with the most pain, worst prognosis, or even end-stages there is a hope and appreciation of every moment of every day that pierces through it all.

Cystic fibrosis as a lifelong progressive condition does not have a cure, remission or break from the weight we carry. Good news is cherished and critical to maintaining hope and a positive mindset. The CF Recreation Grants provided by the CFLF are one instance of good news that impacts lives more broadly than the exercise itself.

“Maeve’s Recreation Grant three years ago was for a one-week sleep away gymnastics camp. At the age of 13, this was the first time in her life she would need to be responsible for her CF care. After that week, she was never the same. She was empowered over her CF. Next month, at only 16, she is doing a one-month homestay in Spain, and there is complete confidence that she can do this!” – Maeve’s father, Derek

In recent years, there has been a revolutionary transformation of treating the root cause of airway congestion in CF. This is providing a critical level of improved health for people like my brother and me who have lived with CF for several years or decades and may have  experienced varying levels of damage to the airways. But to me it is even more exciting to consider the children being born with CF today who may never even experience loss of lung function.

With such opportunity for continued health and longer life, my passion for life has been reemerging from the fluctuating levels of anxiety and depression that can accompany a lifetime of conscious effort just to breathe well. I am cycling long distances again, and swimming in open water farther than I ever thought would be possible. As I plan for my wedding next year, I anticipate achieving the best health I have ever been in with my lung function creeping back up toward the 100th percentile.

Life with CF means giving the ultimate effort and dedication to maintain the limited lung function we have with the aim of reducing decline. The opportunity to actually gain even a fraction of breathing capacity translates into exponentially greater energy, drive and action to do and be more!

Concurrently, the Cystic Fibrosis Lifestyle Foundation will be strategically growing in the coming years to be bigger and better than ever to match the increasing needs of people with CF to breathe deeper while living STROnger and LOnger lives! This. Is. STROLO!

This is YOUR opportunity to stand with me, and with the CFLF in pushing beyond the perceived limits of cystic fibrosis! I founded CFLF in 2003, and over 15 years CFLF has awarded 1,200 grants to children and adults with CF. YOUR belief and support for those who live with this disease is what empowers their transformation from surviving to THRIVING!

A CF Recreation Grant of $500 enabling exercise activities inspires greatness in someone with CF that has residual impacts on the world around us. The benefit of these activities is broader than the exercise itself, but extends into the relationships, empowerment and self-esteem, which contributes to a trajectory of health and longevity.

Consider looking forward to the day that the person you knew with CF wasn’t the sickly child down the street who died too young. Rather, it was Chris who used his grant to cycle 900 miles across the Canadian Rockies; Anna who used her grant to compete in swimming at the World Transplant games in South Africa brining home numerous silver and gold medals; Vicki, who used her grant to touch the sky snowboarding in Lake Tahoe; Malin, whose grant helped her to jump her horse higher than ever; and Xavier, whose grant helped him climb to the top of the world!

THESE and thousands of others are the heroes with CF who are amongst us today, who the CFLF strives to help in breaking through and beyond what was once thought possible! 

Every and any contribution you make will bring unforeseeable outcomes for someone with CF that would otherwise be impossible.

Change the life of someone with CF to be more STROLO than you ever thought possible!!

Thank you dearly,

 

Help Others Live STROnger and LOnger- 

 

 

Brian Callanan is currently 40-years-old, and was diagnosed with cystic fibrosis at birth.  He is the Founder and Executive Director of the CFLF, and practices an active lifestyle primarily through swimming and cycling on and off road, but also enjoys snowboarding, hiking, sailing and rock-climbing. You may email him directly at brian@cflf.org.