Little Victories - a Column by Matthew Lafleur

I’ve never been a fan of making big resolutions at the start of a new year. I don’t like the idea of a “new year, new me.” I think the reason I’m harsh on New Year’s resolutions stems from the onslaught of my progressive disorder, Friedreich’s ataxia (FA). As…

Bionews CEO Chris Comish often repeats the phrase “We’re just getting started.” He’s said it so many times that it’s become an unofficial motto at the company. But the phrase is more than a well-wish; it’s also a call to action and a reminder to stay the course because…

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,…

“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…

Friedreich’s Ataxia News proudly presents “Beyond the Friedreich’s Ataxia Basics,” a live, virtual roundtable discussion taking place at 6 p.m. EST Nov. 1. This free event is open to all audiences — patients, friends and family members, caregivers, medical professionals, and anyone curious about the current state of the…

I’m no cartographer, but the adventurous part of me has always awakened when I hear about the saying supposedly inscribed on ancient maps: “Here be dragons.” Even though historians now believe that the phrase was only used on a single 16th-century globe, the rumor that most medieval maps warned…

Note: This column describes the author’s and interviewee’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Hope is crucial for those in the Friedreich’s ataxia (FA) community. For me, facing a rare degenerative…

The word “enduring” has been on my mind a lot lately. I was thinking about that concept as I saw friends with Friedreich’s ataxia (FA) post on social media about the approval of Skyclarys (omaveloxolone), the first-ever treatment for our disorder. Even though it’s worth celebrating…

The recent approval of Skyclarys (omaveloxolone), the first treatment for Friedreich’s ataxia (FA), is game-changing. But I’m frustrated that there’s still a long journey ahead for me. When this drug was approved Feb. 28, I celebrated in a column posted minutes after the announcement. A few…

From its start, this column has mostly focused on my own reflections and experiences with Friedreich’s ataxia (FA). Although firsthand perspectives are important, navigating a condition like FA isn’t a solitary effort. That’s why I’ve been asking my immediate family members to share their thoughts. My columns have…