Columns

The magic of the season belongs to children — their laughter, joy, and beaming smiles. Though the pediatric population isn’t always seen at events for Friedreich’s ataxia (FA), their value and presence are no less real in our community. I’ve met many incredible caregivers with a…

Actor and activist Michael J. Fox, 62, has been publicly battling Parkinson’s disease since 1998. Although Parkinson’s and my diagnosis of Friedreich’s ataxia (FA) are very different, they are both neurological diseases that affect your ability to function “normally,” cause pain and heartache, and are currently…

When life gets overwhelming, my mind will often escape the reality before me, at least momentarily. I’m unsure if these brief internal retreats are daydreams, escapes, or the products of an overactive imagination; maybe all of them. But I’ll refer to this tendency as “dreaming” in this column. To me,…

I always joke a lot about getting older. Although there might be some perks to remaining in my 20s forever, I’ve never been afraid to grow old. I do fear, however, that some of my goals might be cut short by Friedreich’s ataxia (FA). I’ve grown comfortable with the…

I’ve heard it a thousand times: “Experience is the greatest teacher.” And although there’s a lot of truth to that, I’m not sure it covers every situation. I, for instance, often repeat frustrating or disappointing experiences and wonder how I let myself continue the behavior that led me there. In…

If you’re unfamiliar with Fanny Crosby, allow me to introduce you to one of the greatest poets America has known. After singing one of her great hymns one Sunday as I worshiped at my local church, I later recollected the words and recognized their affinity to this column,…

A nearby candle slowly cloaked the room in the scent of a Christmas tree while my 11-year-old daughter, Amelia, and I sloshed through her homework. My phone lit up with a new memory notification, capturing Amelia’s attention. If you’re unfamiliar with this feature, it pulls photos or videos from a…

As my grandpa always said, “You need the right tool for each job.” Despite this, I always turn to the same tools out of habit when working around the house. My vise grip is almost always close, and I use it all the time. In fact, I often grab…

Before my Friedreich’s ataxia (FA) symptoms began, I was a healthy young adult with active hobbies, big plans, and an extroverted lifestyle. Now, after more than a decade with FA, I’ve seen so much change and many unexpected lessons. Some obvious physical struggles come along with a progressively…

When our daughter Amelia first started showing symptoms of Friedreich’s ataxia (FA) and we headed off on our diagnostic odyssey, something else important happened: The laughter was sucked out of our home. I didn’t notice it at first when a cloud of many hard emotions began…

“Friedreich’s ataxia.” After long months of visiting different kinds of doctors all over my home state, those were the words the neurologist uttered. My family and I had desperately sought a medical reason why I’d begun to doubt and question my functioning, even as my 9-year-old peers were getting more…

Here come the holidays! This magical season that brings people together amid specific traditions, unrealistic expectations, and uncomfortable conversations has been the source of so many Hollywood hits. Then enters Friedreich’s ataxia (FA), which almost always spins life upside down. Who’s excited? I hardly remember my parenting days before…