Living with Friedreich’s ataxia as an adult: Life goals after 40

Conversations about aging with Friedreich’s ataxia (FA) often focus strictly on progression and limitations. However, advancements in treatment are helping a growing number of adults older than 40 challenge that narrative. Rather than viewing midlife as a closing chapter, these individuals are treating it as a second act — a time to redefine independence, pursue new ambitions, and look forward with fresh imagination.

Michelle Krause Huebner: A deeper sense of freedom

Michelle Krause Huebner, 48, was diagnosed with FA at 33 after first experiencing symptoms at 20. She lives in Portland, Oregon. A world traveler, adventure enthusiast, and fused glass artist, she is driven by a desire to keep exploring, creating, and embracing life on her terms.

Michelle Krause Huebner visited the pyramids in Cairo, Egypt, in 2026. (Courtesy of Michelle Krause Huebner)

There are things I’ve had to let go of, but not in the way people often expect. I didn’t grow up questioning independence or tying it to my worth. I simply had it, and like most people, I took it for granted. I assumed it would always be there in the same way, without needing to think about it.

Over time, that shifted. Not all at once, and not with a sense of loss as much as a growing awareness that life was going to look different. I’ve had to let go of the assumption that things would always be easy or automatic. That change required adjustment, but it also created space for a new perspective.

But what has taken its place is something more meaningful: A deeper understanding of freedom. Today, I see independence not as doing everything alone, but as having the tools, support, and mindset to live fully. My mobility equipment isn’t a limitation; it’s access. It allows me to move through the world, to show up, to participate in life on my terms.

If I could share one thing with someone newly diagnosed or younger, it would be this: Love your life. Do the things you want to do. If you want to have a career, build a family, travel the world, do it. Life with FA after 40 is still full of possibilities, purpose, and joy. It may not look the way you once imagined, but that doesn’t make it any less meaningful.

Sean Baumstark: What effort looks like when the path gets harder

Sean Baumstark, 44, lives in Sacramento, California, with Friedreich’s ataxia and embodies the mantra “get stuff done.” Sean ran his first 10k three weeks after being diagnosed in 2007. 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 a documentary film, The Ataxian (2015). He co-hosts the weekly podcast Two Disabled Dudes. For five years, he wrote a twice-monthly column, titled “No Good Excuse,” for Friedreich’s Ataxia News.

Sean Baumstark is the cohost of the Two Disabled Dudes podcast, along with fellow FA patient Kyle Bryant. (Courtesy of Sean Baumstark)

I often think back to my first appointment with a geneticist after being diagnosed with FA. I don’t remember his voice, but I can still picture the sunlight hitting his desk and the calm way he carried himself. The message, though, was far from calm.

He explained that most people with FA are diagnosed young, often need a wheelchair before high school, and have a shortened life expectancy. I remember asking, “How short?” I don’t recall his exact answer, but I walked away thinking I’d be lucky to make it to 40.

That stuck with me.

Over time, I met people who challenged what I thought was possible. They weren’t ignoring the reality of the disease, but they weren’t being defined by it either. That shift changed how I see progress.

Progress for me now is simple: It’s forward motion. The distance matters less than the decision to keep going. It’s showing up when it would be easier not to. It’s adjusting when things get harder instead of quitting. Some days it looks strong. Some days it doesn’t.

Right now I’m training to climb the world’s longest stairway: 11,674 steps up a mountain in Switzerland. I use a walker every day, and I can feel my balance and muscle control deteriorating. That’s part of why I’m going. With a progressive condition like FA, nothing gets easier over time. I’m going while I still can.

The climb isn’t about proving something for a moment. It’s about showing what effort looks like when the path gets harder. It’s about refusing to let FA define what I can do.

I’m also building something different. Rare at Sea started as a simple idea: Bring people in the rare disease community together in one place, no agenda, just space to connect. What came out of it is more than I expected. Real connection, shared understanding, and a lot of smiles and laughter.

That stuck with me.

It reinforced that progress isn’t always physical. Sometimes it looks like creating space for people to feel seen, understood, and connected.

I’ve been shaped by watching others keep going when it would’ve been easier to stop. That’s what drives me now.

If my refusal to quit becomes someone else’s permission to try, then it’s worth it.

Matthew Lafleur: 40 is an ellipsis, not a period

Life isn’t what Louisiana native Matthew Lafleur, 40, expected following his 1994 diagnosis of Friedreich’s ataxia, a rare and debilitating disorder. He obtained degrees in English and mental health counseling. He now writes a column on this site called “Little Victories” and serves as the director of business development and community engagement for the site’s parent company, Bionews.

Matt Lafleur exercises at Train Unique, a gym in Lafayette for people with disabilities. (Photo by Damon Vincent)

For a long time, I felt like I had to let go of the life I thought I was going to have. After grad school, as FA progressed, it felt like everything I had been building toward just … stopped. I went from thinking about a career in counseling and independence to wondering if there was a place for me at all. I’ve described it before as feeling like my life had reached a period.

What I’ve come to realize is that it wasn’t a period. It was more like an ellipsis.

Letting go of that original vision of my life made space for something I never expected: Purpose rooted in connection. Through my work at Bionews, I found a way to stay close to the rare disease community, to help share stories, and to play a small role in moving things forward for people like me. That didn’t replace what I lost, but it gave me something meaningful to build with.

Right now, I’m still building. I’m building a career that centers around advocacy and the patient voice. I’m building relationships within a community that understands both the weight and the hope that come with FA. And I’m building toward the possibility of what’s next, especially as research and clinical trials continue to move forward in ways that didn’t feel real even a few years ago.

What motivates me isn’t the idea that everything will suddenly be fixed. It’s the belief that progress is happening, and that I can be part of it. That’s what keeps me going.