Columns

My son, Brooks, turns 11 this week. Birthdays tend to make me nostalgic, especially my children’s. As the day approaches, I reflect on the passing of time and the coming and going of phases. One of the most memorable phases of my parenting journey coincided with one of Brooks’…

Here in the United States, fall is back-to-school season — something I’m very aware of as the mom of two elementary-age children. This year, the logistics of this season have looked different for my family and me, thanks to our community. Because my balance has been deteriorating due to…

I recently told my husband, Dave, a silly dad joke, but I had to repeat the punchline three times. By that point, it wasn’t even funny — if it ever was. Dave was simply trying to understand me, but I was frustrated that I had to put so much effort…

Last in a series. Read part one.  After a traumatic whirlwind of a day, a sleepless night, and surgery to repair my broken hip, I woke up in the postoperative room. That’s always disorienting because you have no clue how much time has passed, how the surgery went, what…

I’ve been reading “The Book of Delights” by Ross Gay. In it, he describes the small, everyday experiences that bring him joy. I am trying to follow that example, but, unlike Gay, I don’t write down my delights. With Friedreich’s ataxia (FA), the physical act of writing is extremely…

Everywhere I look, I see advertisements on billboards, computer monitors, and even at the pump telling me what I should buy and how I’m missing out on having certain things. We are bombarded by it. We don’t hear as much about personal finance, however. Discussing that often leaves me feeling…

Today, as I do most days, I woke up still tired. My sleep last night wasn’t great, but that’s not why I’m tired. I’m exhausted because I have Friedreich’s ataxia (FA). I tell myself I’m tired, and then the self-help book reader in me says, “Tell yourself you’re energized.”…

First in a series. On Sept. 6, 2025, my worst fear happened. It felt inevitable. I am 100% dependent on mobility aids due to poor balance and coordination with Friedreich’s ataxia (FA). Around the house, I use a rollator walker, but when I’m out and about, I…

During the final hours of the 2019 Friedreich’s Ataxia Symposium in Pennsylvania, the Friedreich’s Ataxia Research Alliance announced that the pharmaceutical company Reata had achieved statistically significant positive results in its Phase 2 trial of omaveloxolone (also known as “omav” at the time and now sold under the brand…

Last week, I had my annual echocardiogram, known informally as an echo. My doctors want to keep an eye on my heart function because I have Friedreich’s ataxia (FA), and one of its more serious symptoms is cardiomyopathy. Monitoring my heart is crucial to detecting any changes early and…

As I heard the words come out of my mouth, I knew I sounded crazy. Yet there I was, pitching the idea to my husband: I wanted us to embark on a 16-hour journey to a place so remote that there’d be no running water or electricity. And we were…

I intended to publish a column in August that brimmed with hope and included a passage by my friend and fellow columnist Elizabeth Hamilton. We wrote about vatiquinone, which was up for approval with the U.S. Food and Drug Administration (FDA). It had the potential to become the…