Columns

When the Impossible Becomes Possible

I’m writing this the night before my best friend’s plane lands in the U.S. I’ve been working nonstop the past three weeks to make sure everything is ready for her arrival, so this installment of my column probably won’t sound as nice or be…

My First Spinraza Maintenance Dose

After my first injection of Spinraza (nusinersen) last November, I posted on Facebook to tell all of my friends and family how it went. Amid the “Glad it went well!” and “Praying for you” comments, my former youth pastor said that he couldn’t help but think…

Humor Gets Me Through the Bad SMA Days

My parents and I have been traveling to Iowa every weekend for the past few months. We recently bought a vacation home in Wisconsin, and we’ve been getting the farm that my mom inherited ready to sell. Other than painfully slow Wi-Fi and a less-than-comfortable bed…

Working On Walking: From Dreams to Reality

I’ve used this space to share little snippets about the nonprofit organization I founded 18 years ago. I’ve shared who was my inspiration behind this foundation and how it all began with one little lemonade stand. Today, I’ll talk about what this organization stands for, and the…

Failing to Learn from Others’ Mistakes

As the famous proverb goes, “Experience is the best teacher.” While that makes sense, I prefer to say, “Other people’s experiences are the best teachers.” Why go through the pain of learning from my own mistakes when I could learn from yours? Unfortunately, I didn’t heed my…

The Amino Acid Diet and Its Benefits

Nutrition has always been a challenge for my daughter, Ella. And, in turn, it is a challenge for my wife and me. Due to Ella’s disease, she has an increased amount of difficulty digesting long-chain fats (meats, cheeses, etc.) and she also has a hard time…

It’s the Little Things

As I’m writing this, my butt is pretty freaking sore. No, I didn’t go bungee-jumping this weekend or hurt myself bull riding; nor did I go to a marathon of all the Marvel movies leading up to “Avengers: Infinity War” and…