Mutations & Conversations - a Column by Tré LaRosa

motivation Tré is a 27-year-old living with cystic fibrosis in Pensacola, Florida who works as a research lead for BioNews Insights. He is an extremely passionate advocate for disabled rights and people living with chronic disease, especially cystic fibrosis. His sister, Alyssa, died at 29 due to chronic rejection of her bilateral lung transplant, pushing him further into the fight for a better world for all. “Mutations & Conversations” discusses the science and sociology that binds us all. He also loves his golden retriever, Duncan, very much.

Empowering Children by Educating Them About Their CF

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…

How Should We Approach Milestones While Grieving?

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…

People with Rare Diseases Are Humans, Not Commodities

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…

Thanking the Care Teams of Chronic Disease Patients

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…

The Bittersweet Downside of CFTR Modulators

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…

Exciting Revelations from the NACFC 2018 Poster Sessions, Part 1

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.