Columns

Preparing for Christmas Celebrations with SMA

It’s not a secret that I’m not a big fan of winter weather. But that doesn’t mean I don’t like a few things about this time of year. Specifically, I love the winter holidays! Christmas has always been my favorite. I love watching my favorite Christmas…

Twinkle, Twinkle, Little Star

I’ve been in awe of spectacular night skies for as long as I can remember. When our family moved to the mountains of North Carolina (close to the stunning Blue Ridge Parkway) at the end of 1995, we realized that we were privy to the magical…

Amid the Stress, I Am Finding Time to Rest

There are only a couple of weeks left in the year and although I’m excited for Christmas, I’m also ready for this year to end. Let’s bring back the Roaring Twenties, shall we? But instead of roaring, maybe a long nap would be better.

A Robot Named Otto Transformed My Life

Four years ago, I put on my big-boy pants and finally learned how to feed myself. Throughout my high school and college years, I was too lazy to pick up a fork on my own. Instead, I just played the disability card and relied on the sympathies of…

I Am the One I’ve Been Waiting for

Like a decent percentage of the global population, I have part of the “Frozen II” soundtrack stuck in my head. The movie is about the unknown. Self-acceptance. Stepping into your power. Themes that are fitting for me, as the sun sets on the second decade of my…

Ella and Daddy Have a Saturday Morning Date

This week was my daughter Ella’s turn to have a date with me. My wife, Lindsay, and I try to spend one-on-one time with each of our three kids on a rotating basis. It fosters relationships and gives them individual attention away from home. Ella…

Pondering the Possibilities of the Future

A few columns ago, I wrote that I no longer was pursuing Spinraza (nusinersen). I still have no qualms about that decision, because we have a number of potential treatments that are slowly making their way to FDA approval, including risdiplam.