I’ve been on my own for the past 10 days while my wife, Wendy, and daughter Jill have been vacationing in Iceland. It’s been challenging. A couple years ago, when Wendy and Jill traveled to Croatia, Greece, and Slovenia, I wrote a column titled “Good to know that I…
Columns
Living with muscular dystrophy for 40 years has taught me many things. I’ve written here about the importance of connection, support, and our shared value as humans. Connections can lead to another cornerstone of our existence: community. We join our first community, our immediate family, as soon…
August here in Nebraska is sweltering. Not only do the temperatures reach the high 90s, but the humidity is suffocating. I’ll never understand why our kids return to school at this time of year, when it’s so uncomfortable outside. But as I write these words, five of my children have…
When I was 13 and fresh from spinal fusion surgery, I sat in a West End theater in London with my family, watching “Les Misérables.” The music stirred my soul and, for a fleeting moment, I imagined myself on stage. But that dream quickly faded. Accessibility barriers at school…
I’m a musician, and so are my brothers, Ron and Tim. We’ve all played professionally, but it’s been a long time since we’ve played together. That changed last month, but let me explain why it was such an event. Back in the late ’70s we were part of the…
There is power in connection. As humans, we all learn this truth at a young age, starting with the people around us when we’re little: our family. As we grow, we connect with other kids at school, in church, and elsewhere in the community, and just by existing every day.
As an artist with Duchenne muscular dystrophy (DMD), I’ve long recognized how creativity can foster meaningful connection, perhaps especially when rooted in design that’s accessible and inclusive. My partner, Amanda, and I recently spoke at GovTech’s Inclusive Design Week 2025 here in Singapore as part of the closing panel…
I’m no longer a young mom, but I was once. In fact, I was a very young first-time mom, as my oldest daughter, Lexi, 24, was born when I was 21 years old. Six more children followed: Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 10; and Callie, 3.
Last summer, I wrote a column about my beach vacation with my family. It was an incredible trip, but I had my doubts about future travel. With my facioscapulohumeral muscular dystrophy (FSHD) progression accelerating, I had to acknowledge that future travel might be difficult, if not impossible. My daughter…
Last Sunday, my girlfriend, Amanda, and I co-led an art workshop that brought us both joy. The accessible art journaling session, “Why your story matters: Where art meets wellness,” was held at the Bishan Public Library in the northern part of Singapore and was part of the National Library Board’s…
Recent Posts
- Talking with my daughter about her journey with DMD carrier status
- Companies join forces to speed production of 1-time treatment for FSHD
- One way to process loss is by advocating for lasting change
- European regulators back new DMD gene therapy with key status
- I am watching a child lose his independence for the third time