New year, same me: This year I’m focusing on small wins
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…
Little Victories — Matthew Lafleur
Louisiana native Matthew Lafleur’s life isn’t what he expected following his 1994 diagnosis of Friedreich’s ataxia, a rare and debilitating disorder. Instead of giving up, he obtained degrees in English and mental health counseling. Unable to find a job after grad school, he applied to write a column at Friedreich’s Ataxia News. Years later, he now serves as the Associate Director of Patient Engagement for that site’s parent company, Bionews. Through his column and his role in patient engagement, Matt hopes to elevate the often overlooked voices of the rare disease population. We are not victims. We matter.
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Overcoming our Kafkaesque nightmare with a ‘MetamorFAsis’
I tend to find messages of hope and resilience in bleak stories. Take, for instance, my column about finding hope in the objectively depressing movie “Requiem for a Dream.” Similarly, another unlikely source…
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As 2023 comes to an end, we’re just getting started
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…
Interpreting why dreams, like FA, are part of my life
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…
Here we are, these dark horses, defying the odds
“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…
Extending the invitation to our first live roundtable discussion about FA
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…
‘Here be dragons’: Navigating unknown territory in life with FA
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…
The importance of finding hope with FA, even after facing setbacks
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…
It takes strength to endure FA and life’s unforeseen challenges
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…
After Skyclarys, a new odyssey begins with Friedreich’s ataxia
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…
My dad’s perspective on 2 of his 3 children living with FA
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.
Growing up with FA while yawning through a superhero movie
As I sat in the darkened movie theater recently, the screen showed a colossal battle filled with too much reliance on CGI. I yawned and checked my watch. Not even halfway into the movie’s…
Approval of 1st FA treatment changed nothing and everything
Melodramatic title aside, Tuesday, Feb. 28, was a nail-biter. The U.S. Food and Drug Administration (FDA) was expected to make a decision regarding the approval of Skyclarys (omaveloxolone) for my rare disease,…
