Columns

I have three teenage sons — Max, 18, Rowen, 15, and Charlie, 13 — who have Duchenne muscular dystrophy (DMD). They have met several sweet milestones over the years, and I love celebrating them. I’ve always made a big deal about birthdays, for instance, as well as decorating the…

I’m currently continuing to do the exercises my physical therapist recommended during my last therapy session. However, it hasn’t been stopping the progression of my facioscapulohumeral muscular dystrophy (FSHD). While I’m hoping the exercises are slowing the progression down, it seems like it gets harder every day for me…

Three weeks ago, my girlfriend, Amanda, and I embarked on a unique journey by co-founding Rebirth Ensemble (RE), an art-making business with a distinct purpose. This partnership is deeply rooted in our shared passion for visual art, which has been a source of joy but also a progressively tricky challenge…

The seasons are changing in central Nebraska. The leaves have turned yellow and orange, a beautiful contrast littered across the green lawns and familiar streets surrounding my home. The mornings are brisk, and I’ve finally pulled out my warmer sweaters and fuzzy socks. I’ve been drinking pumpkin spice coffee for weeks!…

Idlewild, which is near Ligonier, Pennsylvania, is an old-style amusement park that’s been around since the days when the gentry from Pittsburgh took the train to their summer homes in the foothills of the Laurel Highlands. It’s a wonderful park for all ages, but it’s absolutely perfect for…

I’m a mom to seven children: Lexi, 23; Max, 18; Chance, 17; Rowen, 15; Charlie, 13; Mary, 10; and Callie, 2. As part of that job, I’m also a caregiver to Max, Rowen, and Charlie, who all have Duchenne muscular dystrophy (DMD). Additionally, I’m a chronic DIYer (do-it-yourselfer). Yes,…

Since September, my life has moved in an exciting new direction, starting with becoming a marketing communications assistant at Shalom Medcare (SMC), a medical transport company here in Singapore. In case you’re wondering, yes, I realize it’s amusing that the company and I share the name “Shalom” — something…

Like me, my colleagues here at Bionews, the parent company of this website, write about their lives with chronic illness. In our columns, “we make a promise to our rare disease communities to deliver trustworthy information to help educate, engage, and champion the patient voice.” These words appear on the…

I sat in the front row of the football stadium, watching my second-oldest son, Chance, 17, play football. It’s his senior year, and I’ve been front and center at each game. That front row has the accessible seating, which helps because Chance has three brothers living with…

As Western Pennsylvania natives, my wife, Wendy, and I are both Steelers fans. Naturally, when the Steelers played the Dallas Cowboys a couple weeks ago, we tuned in. If you’re not a football fan, you’re most likely unaware that the game was delayed for about an hour and a half…