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.

My Recent Health Revelation Got Me Thinking About Infertility and CF

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”…

How to Overcome the Scourge of Confirmation Bias

Have you ever been caught up in a heated discussion with someone who continually refers to stories that confirm their beliefs? Or had a conversation in which it seemed as if the other person had read only the research that confirmed their side and had no reasonable counterarguments to your…

Science Literacy Is a Necessity in the CF Community

“Bill! Bill! Bill! Bill! Bill!” Many millennials immediately recognize the iconic jingle that was the introduction to the educational (and entertaining!) children’s science show “Bill Nye: The Science Guy.” Bill Nye was the only nonacademic exposure to science that some American kids enjoyed. At least, it wasn’t academic…

Find Out How You Fit into the CF Community

Three years ago, I was hardly involved in the broad cystic fibrosis (CF) community. My only involvement with CF – aside from the fact that my sister and I have it – was some undergraduate research in a CF lab and taking part in Great Strides walks over the…

As a CFer, Birthdays Remind Me that Life Is Fragile

I can remember the day I discovered the truth that I had already suspected in my heart: cystic fibrosis (CF) is a life-shortening disease. I’m just old enough that I couldn’t Google whatever I wanted to at the time. I learned this information from a calendar sitting in my CF…

We Must Pay Closer Attention to the Global CF Population

Based on the stringent qualifications the Cystic Fibrosis Foundation uses to determine who has cystic fibrosis, approximately 70,000 people currently have CF worldwide. That includes 30,000-35,000 in the United States. In this broad population, many subpopulations fit neatly into the CFF’s qualifications. Others do not. As much as we…

My Personal Paradox Sets the Bar Higher and Higher

I have a productivity complex: I feel like if I’m not being productive, I’m wasting my time. And yet, whenever I accomplish something, I don’t bask in the enjoyment of accomplishing that thing. Instead, I’m worried about the next thing I need to accomplish. The to-do list of…

How Do We ‘Speak CF’ in a Way that Connects Us?

We all play different roles in our lives: We are friends, children, siblings, parents, cousins, employees, and more. In each of these roles, we assume the jargon of that role when we talk in those environments. In our workplaces, we may use the scientific, technical, or specific jargon…