Tré LaRosa is a scientific project manager, patient advocate, and writer. He has cystic fibrosis (CF) and carries two copies of the F508del mutation. He’s been on Trikafta since 2019. He writes about science, living with CF, grief, family, and everything in between in an effort to get you thinking about what it means to be human. He lives in Arlington, Virginia with his fiancée Jessica and their two wonderful, lazy dogs, Duncan and Leo. He enjoys playing sports, being outdoors, and reading — and especially buying more books.
My friend Steve Silberman died a year ago on Aug. 29, 2024. I was familiar with Steve before he knew me. Steve had written a highly popular and applauded person-centric history of autism titled…
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I’ve been on Orkambi (lumacaftor/ivacaftor), a cystic fibrosis transmembrane conductance regulator (CFTR) modulator, for just over three years now. My lung function has remained stable during that time. CFTR modulators are medications that…
Last in a series. Read part one and part two. The poster sessions at the North American Cystic Fibrosis Conference (NACFC) in Denver last month included many interesting branches of the wonderful world…
Second in a series. Read part one. The poster sessions at the North American Cystic Fibrosis Conference (NACFC) in Denver last month included many interesting branches of the wonderful world of CF…
First in a series. The poster sessions at the North American Cystic Fibrosis Conference (NACFC) in Denver this month included many interesting branches of the wonderful world of CF research. In this column,…
As much as we resist the idea, cystic fibrosis can become a defining part of identity; a lifestyle that we’re forced without choice to live day in and day out. A choice exists, I…
If you read my column last week, you know I care a lot about the interpretation of words. The word “cure” holds tremendous gravity in the cystic fibrosis community and for scientists. It’s…
Speaking as a writer: Words wield heavy power. Our written and spoken words are capable of mightiness. They can impart life-changing wisdom or inflict pain, whether intentionally or unintentionally. I feel I must be…
I’ve noticed that there are two schools of thought in the CF community about discussing our life with a chronic disease. The first: If we expect others to be considerate and respectful of our…
A strange reality of living with cystic fibrosis (CF) is that we’re usually the only person with the disease we actively, directly engage with, aside from maybe siblings. The many aspects of routine CF…
“So right now we live on borrowed time, I don’t know how long or what is to come in the next few months.” My sister Alyssa posted this sentence in a Facebook update…
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