Let’s Talk About What a CF Cure Really Means
If you read my column last week, you know I care a lot about the interpretation of words. The word “cure” holds tremendous gravity in the cystic fibrosis community and for scientists. It’s…
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.
Featured Post
In the history of CF research and therapies, collaboration is king
The year is 1955, and a group of parents, including the late Doris Tulcin, decides to create an organization dedicated to improving care for children with cystic fibrosis (CF). That organization, the…
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Please Don’t Label Me as Sick
Speaking as a writer: Words wield heavy power. Our written and spoken words are capable of mightiness. They can impart life-changing wisdom or inflict pain, whether intentionally or unintentionally. I feel I must be…
Is It Our Responsibility to Educate Others About CF?
I’ve noticed that there are two schools of thought in the CF community about discussing our life with a chronic disease. The first: If we expect others to be considerate and respectful of our…
What Does It Mean to Be ‘Normal’?
A strange reality of living with cystic fibrosis (CF) is that we’re usually the only person with the disease we actively, directly engage with, aside from maybe siblings. The many aspects of routine CF…
Grieving in an ‘Always Online’ World
“So right now we live on borrowed time, I don’t know how long or what is to come in the next few months.” My sister Alyssa posted this sentence in a Facebook update…
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