Tre LaRosa

Aug 16, 2024 | cysticfibrosisnewstoday.com | Lara Govendo |Tre LaRosa |Margarida Maia |Jennifer Chamberlain

Living with cystic fibrosis (CF) and having a double-lung transplant six years ago has naturally solicited some internal rumbling regarding my own mortality. When I joined the chronic illness community a decade ago, I didn’t expect that the friends I had made would die so soon. We often tend to avoid the topics of death and grief because they’re too painful to face. But death is real, and talking about it helps us understand that we’re not alone. Aug.

Dec 12, 2023 | cysticfibrosisnewstoday.com | Jennifer Chamberlain |Kristin Entler |Aisha I Abdullah |Tre LaRosa

Most parents of children with rare diseases spend their lives trying to ensure that their child outlives them. That usually means taking part in fundraising to support the development of new treatments. But even if a child lives long enough to see a therapy come to fruition, this can be followed by a fight to gain access to it. Younger children with cystic fibrosis (CF) in the United States, such as my daughter, Claire, are living in a revolutionary period of treatment of the disease.

May 19, 2023 | trelarosa.substack.com | Tre LaRosa

Hi, all. Thanks for taking the time to click on this essay on cystic fibrosis awareness month. It’s one of the most important things I’ve ever written. There are multiple audiences and goals for this essay. This essay is in some ways an ode to the global community of people with CF, a community of people that may disagree on some things, but share a rare understanding of what it’s like to live a life filled with frustrations and health consequences due to a microscopic defect. I love this community.