Sean Baumstark lives with Friedreich’s ataxia and embodies the mantra “get stuff done.” Sean ran his first 10k three weeks after being diagnosed in 2007. 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 is a subject in the documentary film, “The Ataxian,” which chronicles a four-man team competing in Race Across America. He co-hosts the weekly podcast, “Two Disabled Dudes,” which encourages listeners to “live beyond circumstances.” He lives and works in Sacramento, California.
I’m just a few weeks from crossing the five-year mark since writing my first column for Friedreich’s Ataxia News. With that milestone approaching, I went back and read some of my old columns. Many made me…
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I’ve spent the last six weeks planning and thinking about the things that are important to me. Most of my time and mental energy is focused on personal goals, finances, de:terminence (the nonprofit organization I founded), and habits…
In some ways, I’m probably late to the party. Like many of my friends and fellow columnists at Friedreich’s Ataxia News, adapting to change has been part of living with a progressive disease. I’ve read…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
Life is more fragile than I sometimes realize. This is true for everyone, rare disease or not. Most days, I feel invincible and think about the next 40 years of my life. On other days, I recognize that I…
Advocacy seems to be taking on a new meaning for me as the years pass and I become more comfortable in my own body. In addition to increased confidence in myself, the Enneagram personality test I previously wrote…
“Are you living by design or by default?” My friend asked me this while we were catching up over dinner after local restaurants started serving on outdoor patios again. My friend knows…
There will always be more to learn in this life. No matter how many years I live or how many experiences I have, I can’t possibly know it all. This is surprising to some degree, because when…
The light at the end of the tunnel can seem elusive and bright at the same time. Perhaps it’s a tug of war or a bit of yin and yang activity, but it’s ever-changing, especially in relation…
I’m approaching what can easily be labeled the midpoint of life for the so-called average person. Of course, such averages rarely take rare disease into account. But even without the progression of Friedreich’s ataxia (FA), living to…
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