Get regular updates to your inbox.
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’s hard to believe we’ve started another year with COVID-19 still in the headlines and on everyone’s mind. I’ve always felt that each year passes faster than expected, but the past two years seem to have flown by even faster than usual.
Read more
This time of year is always chaotic yet fun for me. I enjoy good sweater weather, hot cocoa, and the many Christmas lights I see while driving around town. The chaos comes in many different forms, such as people who aren’t…
Last week, my mom and I visited my aunt and uncle, or her sister and brother-in-law. The trip was different from most of the trips I take, and I’m recognizing that my Friedreich’s ataxia (FA) progression is likely to blame. For starters,…
I participated in a group discussion with fellow Friedreich’s ataxia colleagues Matt Lafleur and Kyle Bryant, along with host Ally MacGregor, to kick off “Movember,” a monthlong effort that aims to raise…
I’m spending a couple days on the road right now, sharing some of my story and philosophies at a fundraiser. This is the first in-person event I’ve participated in since friends at Amicus Therapeutics invited me and my…
It’s peculiar how much of life occurs in cycles. One day I feel like I’m on top of the world, and a week later I’m lying in bed due to exhaustion or sickness. One day I feel like I’ve learned so much…
There’s nothing quite like the realization that you aren’t following your own advice or philosophies about personal growth as well as you could be. At least, that’s the case for me right now. Yet again, I’m feeling grateful for this platform and…
I recently wrote about finding value in allowing myself time and mental energy to contemplate my reality, especially the hard parts. I don’t remember exactly how this initially came up for me, but it’s been on my mind a lot lately.
It seems that the best time to plan ahead is always yesterday, or several hours ago. No matter how much thought or energy I put into planning ahead, it rarely seems sufficient. I suppose I should remember the alternative to not planning…
If you’re anything like me, you spend a lot of mental energy thinking about “what might be” and dreaming about “what could be.” I’ve always had big aspirations, and I reach for the stars when I set my sights on something. I…
I pride myself on getting a lot done and being a productive individual. Although I enjoy some downtime here and there, I often feel pressure from my unfinished tasks or my never-ending to-do list. That pressure makes it hard for me…
Today at work I participated in a meeting, which was really just a gathering of co-workers for the purpose of connecting and visiting with one another for a couple hours. We all worked through a version of an icebreaker activity commonly referred…
Visit the Friedreich’s Ataxia News forums to connect with others in the FA community.
Get regular updates to your inbox.
