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The sheer enormity of SMA can easily become overwhelming. All the physical limitations can cause me to overlook the gifts and abilities I do have. I’ve found that it is imperative for me to identify my strengths, and run with them (OK, drive with them) to the absolute…

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…

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…

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…

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…

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…

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…

I’ve never liked my voice. I went to speech therapy as a child, and people have struggled to understand me for as long as I can remember. I learned at a young age to let my parents talk for me. Even now, at…

  The other day I found myself daydreaming on the way home from yet another hospital appointment. The monotony of the ride was all too familiar to me. This time, however, my spirit felt a little more crushed than usual and my energy lower. If the walls of…

Back in 2014, I was a kid who simply wanted to graduate high school, take a year or two to relax, and go from there. This is not a decision I regret because I generally hated school, and I thought I owed myself a break. However, I…