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.
Like many others, I never want to feel like cystic fibrosis (CF) is holding me back in any way. Yet the condition has shaped many of my experiences and taught me so much,…
Read more
Last week, the Cystic Fibrosis Foundation launched a new initiative called “Path to a Cure.” A press release called it “an ambitious research agenda to deliver treatments for the underlying cause of the…
Lung function — typically measured by forced expiratory volume in the first second (FEV1) — is the boogeyman for people with cystic fibrosis (CF). Whether it’s our lung function, our weight, our BMI,…
A few weeks ago, an article with the headline, “Vertex sinks on reports of deaths of patients taking cystic fibrosis drug,” circulated online. The medication in question was Symdeko (tezacaftor/ivacaftor). I saw…
I dislike making other people feel uncomfortable. Turning a light-hearted conversation into a heavy one by referring to my sister’s death, or standing up for myself to reduce infection risk, is the social equivalent…
Toward the end of my time in college, I faced an identity crisis. For more than seven years, I had been dead set on becoming a physician. I had no question in my…
Every few months, I like to take breaks from social media. Sometimes these breaks are total, self-enforced social media blackouts. I delete the apps on my phone, use another app to block the…
This column was my first official writing gig. I started my blog almost three years ago, but my posts were inconsistent and didn’t have a clear voice. “Mutations & Conversations” provided me…
Last week, I was invited to speak to the Cystic Fibrosis Foundation to discuss my personal experiences with cystic fibrosis (CF). Coincidentally, my speech happened to fall on the anniversary week of the beginning…
Few phenomena fascinate me more than human happiness. So often we get caught up in the idea that we would be happier if so-and-so happened. I’m sure I won’t be the first to tell…
Climate change is an emergency facing humanity. As we continue to burn fossil fuels and release greenhouse gases, solar heat levels build up in the atmosphere, which acts as an incubator, causing our…
Doctors receive training in particular specialties and, in some cases, subspecialties. But “specialties” and “subspecialties” can be described as a “broad array of diseases” and “broad array of fewer diseases.” I’m not trying to…
The cystic fibrosis community has access to three cystic fibrosis transmembrane conductance regulator (CFTR) modulators right now: Kalydeco (ivacaftor), Orkambi (lumacaftor/ivacaftor), and Symdeko (tezacaftor/ivacaftor). These CFTR modulators are each approved for…
Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.
Get regular updates to your inbox.
