NACFC showed the power of people coming together to fight CF
I attended this year's conference with my wife and my parents
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Longtime readers may recall that my first job after college was as a researcher in a cystic fibrosis (CF) lab at Cincinnati Children’s Hospital Medical Center. It was a transformative and deeply informative period of my life.
I learned in the lab how frustrating science can be. For every bit of progress, it felt like we ran into twice as many setbacks. I quickly learned that everything I thought I knew about CF biology just barely scratched the surface. In fact, the more I learned, the less I knew.
The year 2016 was in that liminal period between the approval of Orkambi (ivacaftor/lumacaftor), when we didn’t know if CFTR modulators would be capable of rescuing CFTR function for people with at least one copy of F508del, and the approval of Trikafta (elexacaftor/tezacaftor/ivacaftor), when it was proved they were.
As somebody living with CF, working in a CF lab and at the hospital where I was taken care of when I was a child was a dream come true. After years of hoping to play some small role in curing CF, I finally felt like I was doing something I was born to do.
Most of the other people in the lab, though, had no connection to CF. And yet, they had dedicated their lives to doing what they could to help me, my sister, and others like us. While researchers told me that they were inspired by my story, I told them how much they inspired me. Now, whenever I meet a researcher or clinician who works on CF, I ask them how they ended up in this field. It’s one of my favorite questions.
Making a life with CF possible
There are more people involved in researching and caring for people with CF, or fundraising and advocating, than there are people with CF. About 40,000 people have CF in the United States. CF is common for a genetic disease, but it’s considered a rare disorder. The annual North American CF Conference (NACFC), which took place in Atlanta two weeks ago, is the keystone event that embodies this strange reality.
Tré LaRosa, second from left, is shown with his wife, Jessica, and his father and mother, Frank and Sue, at the closing ceremony of the North American Cystic Fibrosis Conference. (Courtesy of Tré LaRosa)
I spoke at this year’s conference and got to attend it with my wife and my parents, the first time we’ve all gone together. It was energizing to hear the incredible progress happening in CF, from advances in gene editing trials to atypical biomarkers being assessed for different strains of bacteria.
And for us, it was a family affair. We saw several of my physicians from over the years, one of whom my parents hadn’t seen in nearly 20 years. The older I get, the more it seems like the stress of life can weigh me down and obscure what matters, but having this experience with my parents and wife brought things into focus. When my parents took me to the physician who cared for me so long ago, I didn’t think I’d live to see 30. Now I’m 32, healthier than I’ve ever been, married, and planning to have a family with Jess.
It was an honor to speak at this year’s event, and knowing I am the direct beneficiary of the work of so many people, all who are dedicated to giving people like me a chance to have a long life, was especially resonant. The life I am living today, one that is vibrant and hopeful, would not be possible without their work. I would not be here if I didn’t have access to the medications that I have, which wouldn’t be possible without the Cystic Fibrosis Foundation. And it wouldn’t have been possible without the work of researchers who worked to understand the underlying biology of CF and researchers who ran clinical trials to evaluate the safety and efficacy of medications.
It would take many books to highlight every milestone that has helped give me this life. And I would still come up short. I am grateful that so many people have joined in this fight with me. The momentum feels unstoppable.
I know this disease will be cured one day because I see how invested so many people are in making that a reality.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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