Columns

Six months ago, if I had been tied to a very uncomfortable chair and tortured for weeks while interrogators screamed, “What is your greatest fear?” the only things I could have come up with would have been maybe … centipedes. Or dying in a hospital bed. Or maybe that the…

Two weeks ago, I watched a livestream of the North American Cystic Fibrosis Conference (NACFC) as I popped Trikafta (elexacaftor/tezacaftor/ivacaftor) tablets out of their blister pack. Francis Collins, one of the researchers who discovered the cystic fibrosis transmembrane conductance regulator (CFTR) gene, was singing to an audience of…

I don’t write much about my work at Bionews Services, which publishes Cystic Fibrosis News Today. I guess doing so seems a bit awkward since I’m a senior director at the company. In my gig, I head the columns division, which publishes patient and caregiver voices across dozens of rare…

I’m writing this column on the day I start treatment with Trikafta (elexacaftor/tezacaftor/ivacaftor), a new cystic fibrosis (CF) medication that I believe will be regarded as an inflection point in CF history. If you’re involved in the CF community or have been on social media in recent weeks,…

At this time last week, I was crying. I was crying because I didn’t “want to let them down.” The potentially disappointed party in question was a new company within my professional dance company, aptly titled “Comebacks.” Initially, I wanted Comebacks to be the ultimate “comeback” for former…

It’s time to move forward. The recent approval by the U.S. Food and Drug Administration of the triple-combination treatment Trikafta (elexacaftor, tezacaftor, and ivacaftor) has sparked hope in the cystic fibrosis community. While it’s not a cure, the therapy has shown to have positive…

Last week, the Cystic Fibrosis Foundation launched a new initiative called “Path to a Cure.” A press release called it “an ambitious research agenda to deliver treatments for the underlying cause of the disease and a cure for every person with cystic fibrosis (CF).” It added: “The Foundation is…

Two of my friends are dead. And I’m scared. Recently, I lost two friends on the same day. One was in love with a dear friend of mine — he has a milder form of cystic fibrosis, and they successfully loved and lived for years. The other I texted nearly…

In my senior year of college, I wanted to be just like Dad. He’s a courageous traveler who has filled many passports and has eaten all sorts of weird foods. The problem was that traveling kind of scared me. No, it really scared me. It seemed like every plane…

Lung function — typically measured by forced expiratory volume in the first second (FEV1) — is the boogeyman for people with cystic fibrosis (CF). Whether it’s our lung function, our weight, our BMI, our liver levels, or our glucose levels, our lives are an assemblage of numbers, values, qualifiers,…