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.

The Resiliency of the Human Spirit

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…

Why the CF Community Should Be Concerned About Climate Change

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…

Our Relationships with Our Doctors Are Stronger When We Self-advocate

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…

Is There an Upper Limit to the Improvements That CFTR Modulators Can Provide?

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 Long-term Effect of Disability Language

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,…

Transforming Adversity into Progress

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…