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Ataxia awareness
What actually changes in your life the day after someone becomes aware of it? I’ve been thinking about that question lately. International Ataxia Awareness Day is coming up, so many of us in the Ataxia community will spend the day doing exactly what the name suggests. We’ll share our stories and try to explain a...
The assumption most people don’t think about If you and I were sitting together (not at an event or an appointment, just talking), you’d probably hear me say something people rarely think about. One of the most surprising parts of walking differently with Ataxia isn’t just the balance trouble or even the falls. It’s how...
Ever tried explaining why you can trip on flat ground, slur a word at dinner, and still feel ‘fine’? That’s Ataxia—unseen, misunderstood, and rarely simple to explain. Bringing it up isn’t simple, and it’s not something that slips easily into everyday conversation. For someone newly diagnosed—or even for those of us who’ve been living with...
When you’re navigating exercise with Ataxia, it’s not about perfection—it’s about possibility. Sometimes the smallest step in the right direction ends up being the biggest step of your life.— Naeem Callaway A few months ago, I asked my physical therapist something that had been on my mind for a while: “Is it possible to gain...
Last week, I finally launched InspireThread—something I’ve been quietly working on for months. Yeah, it’s an online shop, and sure, there are other awareness stores out there. But for me, this one’s different. It’s part of a bigger picture— another way to take all the things I’ve been through and turn them into something real....
Part of the Resilient Voices series — honest stories and perspectives on living with Ataxia and beyond. What happens when someone in the spotlight shares exactly what no one expects? That’s what happened when Bachelor Australia alum Megan Marx opened up about living with a rare neurological condition called spinocerebellar ataxia (SCA6). At 33, she...
Not all superheroes wear capes. Some wear vests. When Joel An saw his mom struggling to walk safely across the room, he didn’t just sit with that feeling. He started building something to help his mom—a smart vest designed to support balance. But what he built has ended up helping a lot more people—those living...
I’m thrilled to share this article by Franke James, an advocate, artist, and deep thinker whose work explores the intersection of technology(ChatGPT), health, and human experience. In it, Franke offers a unique perspective on how artificial intelligence might one day assist with movement disorders like Ataxia, not as a cure but as an innovative partner...
If you’re living with Ataxia—or know someone who is—you’ve probably heard some buzz about new treatments on the horizon. One of the biggest headlines lately is the progress of Troriluzole, a new drug from Biohaven that is currently under FDA priority review for Spinocerebellar Ataxia (SCA). (Read the official news release here.) Why am I...
Raising awareness is the first step toward change. Together, we can bring hope, inspire action, and create a world where Ataxia no longer limits lives. What is Ataxia Awareness Day? Ataxia Awareness Day, September 25th, is a global event to raise awareness about Ataxia, a group of neurological disorders affecting coordination, balance, and speech. This...
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My purpose

michael mantz
Life rarely goes as planned. This blog is about navigating what actually happens – major disruptions, health challenges, and the quieter work of figuring out who you are through all of it. I write from inside that process. I have Spinocerebellar Ataxia (SCA 15), a rare neurological condition that shapes my perspective but doesn’t define this space. Some articles are personal. Some are practical. All of them are honest.

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