Last week, I traveled to the headquarters of my employer, Bionews, the publisher of Muscular Dystrophy News Today. The trip took me from Newport Beach, in Southern California, to Pensacola, in the Florida Panhandle. While it was an interesting experience, it wasn’t without its challenges, especially with Duchenne…
Columns
Most weeks, I toss around column ideas with my friends and family, asking them for advice on what they think could be important or interesting for me to write about. Last week, my husband said, “Umm, how about the fact that you’re heavily pregnant and Alfie is about…
Welcome back to “Hidden Truths.” This week I wanted to move away from the style of my first and second columns and discuss how one of the most basic emotions relates to muscular dystrophy (MD) and other chronic illnesses. Guilt occurs when a person feels regret or shame in response…
I recently started watching a YouTube channel called Yes Theory, which inspires people to “seek discomfort.” The cast of the video blog often go on trips to remote parts of the world, perform on the street, or push their bodies to the limit, all in the spirit of being…
Before my 2-year-old son, Alfie, was born, I was a primary school teacher. While I still work occasionally on a casual basis, it’s a much smaller part of my life than it once was. One of my favorite things about being a teacher was the constant learning — and…
What does it mean to live? Different people and places may prompt varied answers to this question. For example, in the United States, a person on artificial life-support is considered to be alive, while other people or cultures may not agree with this definition. So, what does it mean to…
My life has been quite busy lately. Between starting my full-time job at Bionews, helping produce two Call of Duty League YouTube shows, working on other freelance journalism projects, and managing my health, which gets progressively worse because of Duchenne muscular dystrophy, I’ve become a bit overwhelmed. When…
Last June, my 2-year-old son, Alfie, had his first surgery to place a feeding tube. It has now been a year since the percutaneous endoscopic gastrostomy (PEG) tube replaced the nasogastric (NG) tube that previously passed down his nostril and throat. Alfie first had an NG tube for…
I stood behind my father in uncomfortable silence. The summer had come to a close, and another school year was preparing for takeoff. I didn’t want to make eye contact, because it was easier for me to let my dad handle the situation, and all would be well. However, I…
How would you respond if I asked, “Who are you?” While the question may seem simple, it is deceptively complex. A college professor of mine once asked the class this question. As students took turns answering to the best of their ability, the professor offered rebuttals replete with “what ifs.”…
Recent Posts
- MDA 2026: ‘Body of evidence for Elevidys continues to grow’
- Living with Duchenne grants me unique insight into accessible design
- MDA 2026: FDA decision on deramiocel for DMD expected by August
- MDA 2026: Dyne therapy boosts strength, cognition in DM1
- MDA 2026: Duvyzat shows DMD benefits even at lower dose levels