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.
Deciding when to disclose certain aspects of my life, and to whom, can sometimes be challenging. Although I’ve got a handful of things I don’t necessarily advertise, my living with Friedreich’s ataxia (FA) can be a bit glaring…
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I can’t put my finger on why, but lately, I’ve been thinking about how fragile and short life is. More than ever, I feel challenged to make the most of my time on earth. I’m sure everybody has a…
Much like fingerprints, many experiences are similar at a glance but unique upon closer examination. This is especially true in the rare disease community. Although our conditions are very different, we have many things in common. This has been…
I feel fortunate that I still enjoy a lot of independence and mobility, despite Friedreich’s ataxia (FA). My progression has been slow and mild compared with many folks with the disease. I’m 42, my heart is healthy, and…
Because of my mom’s poor health, I’ve been spending more time lately talking with my family. I recently spent a few days with one of my brothers helping Mom settle back into her house after nearly eight weeks…
I’ve heard it on TV and in movies and read it all the time, a seemingly universal message to caregivers: “Remember to take care of yourself.” Although I’ve never disagreed with that advice and I’m sure I’ve said those…
Throughout the last decade of volunteering and serving the rare disease community, I’ve often heard health-related companies and organizations reference the “patient voice.” This refers to the value of a patient’s experience and perspective when developing something meant to…
A common question I ask people when trying to get to know them is, “What do you like to do for fun?” I consider this a safe, neutral question because people can define fun however they want. Plus, there…
I’ve always valued people’s advice, especially when I ask for it. However, nothing beats living and learning. Due to the progressive nature of Friedreich’s ataxia (FA), I’m constantly learning. As I age and my FA symptoms…
I’ve recently been asked a couple questions that have stayed on my mind. As someone with Friedreich’s ataxia (FA), I receive many questions regarding my mobility device and overall disability. I’m often asked, “Why do you use a…
It’s usually easy for me to write about noticeable and significant issues related to Friedreich’s ataxia (FA), such as a severe hip injury or a new treatment option. Although I’ve written about seemingly insignificant, behind-the-scenes frustrations,…
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,…
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,…
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