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 with a space to write about the many facets of life with cystic fibrosis (CF) without…
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.
Note: This column describes the author’s own experiences with Trikafta (elexacaftor/tezacaftor/ivacaftor) and Orkambi (ivacaftor/lumacaftor). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Last Friday, I attended a Rare Disease Day event hosted by the National Institutes of Health (NIH)…

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 of this column — which has been critical to the development of my skills as…
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 you that the grass ain’t always greener on the other side. This idea is known as…
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 planet to get hotter. Some populations will be more severely affected by climate change than others…
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 dismiss the expertise of medical professionals or reduce them to their skill sets. I’d never…
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 specific mutations and age groups. If you’ve been following the progress in this area, you’ll be…
The life of a person with CF is constantly affected by language. A common debate in the community is how best to label us. Is it better to call someone a CFer or a person/adult/child with CF? To some, CFer means their life is singled down to one identifying characteristic,…
I’ve always been able to eat whatever I wanted. That’s just a part of growing up with CF. Kids are picky eaters to begin with, but when you combine the inability to gain weight with pickiness, it results in headaches and frustration. So, when I was a kid, our doctors…
In my senior year of high school, I went to the exercise section of Dick’s Sporting Goods and searched for boxing gloves. I had decided on a whim that I wanted to learn how to box. At the time, I was mostly weight lifting, and the majority of my…
Since I work in a cystic fibrosis (CF) lab and prioritize being open about my experiences with the disease, I’ve had some pretty heavy philosophical conversations with scientific peers. One of those conversations has been about my perspective on the concept of passing on the CF gene. CF is a…
Growing up, I was insulated from the wider cystic fibrosis (CF) community. Since I had a sibling with CF, I didn’t feel the need to meet other kids with CF. My sister Alyssa and I had an amazing bond in which CF was a part of our lives. It allowed…
Most clinical manifestations of cystic fibrosis (CF) are in the lungs, pancreas, gastrointestinal tract, and sometimes the sinuses, kidneys, and liver. Unsurprisingly, these concerns attract most of the attention. And CF’s main clinical manifestations should warrant most of the focus. But it’s crucial that we don’t forget the “less serious”…
Your CF Community

Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.
Recent Posts
- Smoking cessation program for CF caregivers shows benefits: Study
- Navigating complex sleep issues in life with cystic fibrosis
- Experimental CF therapy SPL84 granted priority status in Europe
- I’m confident we will one day have a cure for cystic fibrosis
- Medications gave my daughter a measure of control, but never freedom