Sean lives with Friedreich’s ataxia and embodies the mantra “get stuff done.” He believes excuses hold us back from being our best. He is the founder of de:terminence, a nonprofit helping disabled individuals experience the beauty and power of physical achievement. He also co-hosts a weekly podcast, “Two Disabled Dudes,” which encourages listeners to “live beyond circumstances.” He lives and works in Sacramento, California.
It may be old news by now, but for those of us living with Friedreich’s ataxia (FA), there is a particular buzz about the very first treatment for FA approved by the U.S. Food and Drug Administration,…
Read more
Before I was diagnosed with Friedreich’s ataxia (FA), I knew little about disabilities and nothing about rare diseases. I grew up seeing an accessible parking placard in every car my dad owned, but his disability was due…
I learned that I had Friedreich’s ataxia (FA) just a few weeks before I turned 25. The news came in a phone call, but without any description or explanation; instead, the diagnosing doctor said they’d scheduled me with a…
Occasionally, a random and seemingly minuscule thought sticks with me and eventually consumes my mind. I’ve never thought of myself as intelligent, but I have always been hopeful that I am getting wiser as I age. Some of…
I’m not a fan of cold weather at all. Even when I could manage my legs with skis or a snowboard attached, I was never interested in being out in the snow. Of course, I enjoy the views…
One of the few lines I, and most others, remember from the movie “Forrest Gump” is, “Life was like a box of chocolates. You never know what you’re gonna get.” It often comes to mind when…
With Thanksgiving just days away, I’ve been participating in many exercises in which I’ve had to mention things I’m thankful for. This is a familiar routine this time of year. As I’ve aged and Friedreich’s ataxia (FA)…
Thanksgiving is an important holiday in the U.S., and as it’s just over a week away, it’s sparking many ideas for writing topics. (If you read my last column, you know I appreciate all the help I can…
I rarely have the foresight to make a note about something I want to write about. Instead, I often sit and stare at a blank document. While sitting and staring, I replay the experiences I’ve had over recent weeks,…
Not long ago, I had the pleasure of recording a Zoom session with fellow Friedreich’s Ataxia News columnist Kendall Harvey. Kendall wrote a column that inspired my podcast co-host, Kyle Bryant, and me to dig a little…
Advocacy can be a tricky, give-and-take process. So often those of us living with disabilities are faced with mixed emotions as we go about our daily activities. On the one hand, we’re told to be grateful for our remaining…
Tensions are always high and opinions seem to be loudest whenever it’s election season. Of course, it’s best to avoid the topic of politics at holiday gatherings, meet-and-greets, and in this column. However, given all the recent…
Visit the Friedreich’s Ataxia News forums to connect with others in the FA community.
Get regular updates to your inbox.
