Category

Research and Development
AQNEURSA FDA approval ataxia
4

A Win for A-T Isn’t a Win for SCA15, But It Still Matters

0
October 6, 2026, ,
On September 18, the FDA approved a drug called AQNEURSA for ataxia-telangiectasia, a rare, inherited form of ataxia that mostly appears in childhood. It’s the first treatment ever approved specifically for A-T, which is a genuinely big deal. I don’t have A-T myself. I have Spinocerebellar Ataxia type 15, a different condition entirely. But I...
REM sleep behavior disorder vs sleepwalking
4

Why Am I Having Such Weird Dreams? Reviewing What the Research Actually Says

0
September 8, 2026, ,
I was scrolling through a support group recently and came across a post from someone asking whether anyone else experiences unusually vivid, unsettling dreams and a strange, off feeling upon waking. He couldn’t quite explain it, only that something about his sleep had changed in a way he didn’t yet have words for. A few...
Gyropack for ataxia
3

The Space Tech Backpack for Ataxia, and Where It Actually Stands

0
September 1, 2026,
I recently came across an article about a backpack built with real aerospace technology. It uses the same gyroscopic principle that keeps satellites oriented in orbit, and is designed specifically to help people with ataxia stand and walk more steadily. It’s the kind of headline that sounds made up until you read the actual study...
Friedreich's ataxia research
2

An Update in Friedreich’s Ataxia Research

0
August 18, 2026,
Researchers at St. Jude Children’s Research Hospital found a way to reactivate a gene that is silenced in Friedreich’s ataxia. The study was published on August 5. FA isn’t my type of ataxia; I have Spinocerebellar Ataxia type 15, a different condition with a different genetic cause. But research like this often matters beyond the...
voice banking
3

What Is Voice Banking and Why You Should Know About It Now

1
July 7, 2026, ,
On June 29, 2026, former NFL running back Chris Johnson sat down with Michael Strahan on Good Morning America to discuss his ALS diagnosis. He is 40 years old and has not spoken in his natural voice for some time. But the voice from the speech-generating device he used sounded like him because it was...
gene therapy for ataxia
1

Gene Therapy for Ataxia: What This New Trial Really Means (and What It Doesn’t)

2
January 28, 2026,
I saw the screenshot the same way many people probably did, as a post about a new gene therapy trial for Friedreich’s ataxia. “First patient dosed.” Big words. Big implications. The kind of headline that makes your nervous system lean forward for a second before your rational brain has a chance to catch up. For...
SMA treatment breakthrough
2

When One Rare Disease Advances, We All Move Forward

0
November 29, 2025,
Why the New SMA Treatment Matters for the Whole Rare Community Some recent news is worth paying attention to, especially if you live with a rare neurological condition. The FDA approved Itvisma, a new gene-replacement therapy for Spinal Muscular Atrophy (SMA). It’s designed for children 2 and older, teens, and adults. For families who have...
4

Troriluzole Decision: When Hope Pauses for Ataxia

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November 11, 2025, ,
This morning, I opened an email I wish had said something different. The subject line read: “FDA issues Complete Response Letter for Biohaven’s VYGLXIA (troriluzole).” Read Here In short, it wasn’t approved. For most people, that headline might scroll by unnoticed. But for those of us living with Ataxia, or part of the early access...
Ataxia gene therapy survey
3

Your Voice Matters: Shaping the Future of Ataxia Gene Therapy

0
August 29, 2025,
Science can only move forward if people are willing to share their voices. That’s what makes the Ataxia Gene Therapy Survey such an important opportunity. For once, the spotlight isn’t only on labs, data, or test tubes—it’s on you. The National Ataxia Foundation (NAF) and Ataxia UK have launched a global survey to gather patient...
rare disease treatment
3

Pushing for Progress: Why the FDA Must Prioritize Treatment Options for Rare Diseases Like Ataxia

0
May 13, 2025,
Over the weekend, I received an email that struck a chord, not just with me, but with anyone living with a rare condition that feels overlooked. It was a petition urging the FDA to consider treatment options for rare diseases with unmet needs, specifically mentioning spinocerebellar ataxia (SCA). You can read the petition here. For...
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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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AQNEURSA FDA approval ataxia
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REM sleep behavior disorder vs sleepwalking
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Friedreich's ataxia research