“Something Rotten!” is one of my favorite Broadway shows. I wrote about this musical comedy before in a piece titled “‘Welcome to the Renaissance’: A New Beginning for CF Patients.” This week, I wanted to use the show to discuss a different subject: What happened when my passion became…

The Broadway musical “Newsies” chronicles the true story of the New York newsboys’ strike of 1899. In the song “Watch What Happens,” Katherine, a journalist, scans through a selection of newsworthy headlines. The lyrics open with, “Write what you know,” a piece of advice all writers have been given.

Burnout. Everyone knows the feeling, especially patients and their advocates. My burnout stems from the ongoing pandemic and the harsh contrast between government mandates and doctor advice. It stems from the quantity and quality of advocacy that I choose to post on social media every day, an activity…

More than 160 cystic fibrosis (CF) patients representing 46 states met virtually with congressional lawmakers to advocate for legislation that would provide a more robust antibiotics pipeline. As part of the Cystic Fibrosis Foundation’s (CFF) 15th annual March on the Hill, advocates sought sponsorship support for the…

I didn’t know how impactful organ donation was until it personally affected my life. I first learned the details of it through my evaluation for a double lung transplant. Since that surgery four years ago, I’ve frequently witnessed the impact the process has on both the recipient and the donors’…

In honor of the release of “Tick, Tick… Boom!” I wanted to mention one of my favorite composers, Jonathan Larson, and one of my favorite Broadway shows, “Rent,” which he wrote when he was a young, struggling artist and chronic illness patient. The story, which follows a…

Having a chronic illness, or caring for someone who does, means spending a lot of time thinking about an organ or body system, usually in a very specific way. I’ve spent a lot of time thinking about the lungs of my younger sister, Mary, who has CF. I’ve stressed over…

More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…

It’s been a long time coming for me to write directly about my life with cystic fibrosis in a body that gives me no choice but to balance illness with society’s definition of a normal life. I am here, in part, to be honest, and to find connection within that…

Because we just honored Rare Disease Day on Feb. 28, I’d like to share what it’s like living with one. Having a rare disease means strangers telling you what your rare disease means, even though they’ve never lived or worked with it themselves. It means existing with stereotypes…