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…
Mutations & Conversations - a Column by Tré LaRosa
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…
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…
For nearly three years, I’ve worked alongside brilliant CF doctors, scientists, and PhDs at a great research hospital. Before that, during college, I worked closely with CF scientists and PhDs at the University of Kentucky. All in all, I have about five years of experience in CF science.
The CF community’s strength is in its powerful, far-spread voice. For people with a chronic disease, and doubly so when that chronic disease is rare like CF, it is critical for the community to be involved and educated. The CF community is exactly that. When a perfect storm…
Let’s Talk About Death and Grief
I consider myself a conversation-starter. I like discussing serious topics and sharing my genuine feelings and thoughts with others. I enjoy talking about sports, engaging in light banter, and dissecting the plots of TV shows — even why “The Bachelor” or “The Bachelorette” made the wrong choice. I’m…
I walk two paths: One is that of logic in my career as a scientist. In this field, it’s critical to remove emotion from the picture as much as possible. I work as a cystic fibrosis (CF) scientist so that isn’t always easy, but it is important. The…
The Power of Escapism
One of the first fiction books I read in adulthood was a book called “The Amazing Adventures of Kavalier & Clay,” by Michael Chabon. The story of how I came across “Kavalier & Clay” begins in high school. In my senior literature class, we had to write…
During my sophomore year of college, the background on my computer screen was a cystic fibrosis transmembrane conductance regulator (CFTR) protein, specifically a visualization of its quaternary structure. It looked something like this image. The simplified graphic isn’t an exact representation of what the CFTR protein looks…
In high school, I aspired to be a pulmonologist for obvious reasons: I wanted to aid the CF community by directly helping patients. It seemed logical. I dreamed of becoming a pulmonologist because my CF doctors had been some of my greatest role models. They were quite literally…
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