One of my earliest memories from elementary school was leaving class a little early before lunch to go to the nurse’s office to take my enzymes, always accompanied by a school peer. I wasn’t allowed to bring my enzymes with me to school because entrusting a young kid to take…
Mutations & Conversations
— Tré LaRosa
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.
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My sister, Alyssa, has been a frequent subject of my writing since she died in 2018 at age 29. Even when I wasn’t sure of myself as a writer, she was highly supportive of my burgeoning interest in the craft. After she died, I determined that writing, especially about grief…
When Serena Lawrence, the late Bionews senior columns editor, responded to my email about potentially writing for Cystic Fibrosis News Today and promptly offered me a columnist position, I was awestruck. This was the first concrete (read: monetary) endorsement of my writing. My hope with this column was to…
If you keep up with CF research, you may have seen the news about Phase 3 of the triple combination Vertex therapies. In these results, patients had a robust lung function boost after trialing a triple combination therapy treatment. More importantly, these results were tested in a broad population…
The period between Halloween and New Year’s — what I usually call “the Holidays” — is the time of year I’ve always most enjoyed. Christmas music, chilly weather, early evenings, annual reunions with family — all of that made waking up each day my absolute favorite. I would reflect on…
As I’ve grown older, I’ve become a self-advocate, taking initiative when possible. I’ve developed a close relationship with my care team, which I believe is crucial for adults with CF who want to become authorities on their care. I took a sociology class in college on healthcare ethics. We…
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 “fix” the defect that causes cystic fibrosis. “Fixing” the defect means improving CFTR function. A person…
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 of CF research. In this column, I’ll finish with a series of short overviews of interesting…
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 research. In this column, I’ll continue a series with short overviews of interesting posters from each…
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, I’ll share a short overview of an interesting poster from each topic to showcase promising developments.
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 presume; we have the choice to take care of ourselves, to take our medications, to do our…
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 the Holy Grail of CF science and what we ultimately work toward. CF is a progressive…
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 transparent about life with cystic fibrosis so that I can use my experiences to share learned…
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