Finally, I am gaining momentum writing the script. But as a project manager, writer, editor, analyst and videographer, I had to drop out of the “writing zone” to squeeze in the last on-camera interviews for the film. I drove to a small town an hour away to visit Ron, Gerry and their ten children. All great kids. I saw half of them splashing about in the pool when I arrived.

Ron Goguen

Ron and Gerry have two sons who have cystic fibrosis (CF) a genetic disease that causes thick, sticky mucus to build up in the lungs and digestive tract. It is one of the most common chronic lung diseases in children and young adults and may result in early death. I’ve interviewed a fair number of patients for my first film (Getting Back on Their Feet) and for this film, but I was struck by the humility of these young men who have battled CF since they were born.

So, how does CF fit into this documentary? Though it is an inherited condition, it’s been studied carefully as a biofilm-related disease for decades. Research dating back to the 1980s shows that chronic bacterial infections are caused by the ability of bacteria to organize themselves in microcolonies called biofilms. In this state, the bacteria are embedded in a self produced protective matrix, often with surrounding inflammatory cells. Bacteria living in biofilms are protected against antibiotics and host immune defenses. Still other studies show that lung infection in CF patients is a biofilm-based infection and identified P. aeruginosa as microcolonies embedded in alginate. See more about CF on pubmed, where you will find myriad research abstracts like this one.


So, back to my interviewees — Ron, Tommy and Manny who taught me a lot about CF. And there’s a lot to know about managing CF as it presents so many challenges to the family. Manny told me when he was born twenty years ago, the life expectancy for a CF patient was in the teens, now it’s twice that…and he even met a 50 year old CF patient. He remains hopeful that continuing medical advances will improve his quality of life and lifespan. They both detailed the list of antibiotics, enzymes and vitamins they take daily, and the use of the “vest” to vibrate their lungs to help cough up the mucus in their lungs. And then there was the occasional extended stay visits to the hospitals where they received a “deep clean out” of their lungs with the administration of IV antibiotics and enzymes.


I also learned of their resilience as athletes to rise above what some people may see as a disabling disease. So what do these young troopers do to have fun while managing their CF? They compete in cycling races. Not just any sissy two or three mile race…we’re talking forty to sixty mile races! It turns out they learned that the strenuous exercise strengthens their lungs while simultaneously clearing them. Check out the TeamCF web site or these pictures for a closer look at their competitive racing. Even when I was their age, fit as a fiddle and cycling, races like these would have killed me. In my book, these guys are heroes and an inspiration to us all.