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Last October, I wrote about a potential gene therapy for Huntington’s disease, an illness my family is very familiar with, as my wife, Jill, and daughter, Alexus, are both gene-positive. The experimental treatment is called AMT-130. According to uniQure, the therapy’s developer, top-line data from…

There was a time when I measured a good day by how closely it resembled my old life. Could I move fast enough? Think clearly enough? Get everything done on my to-do list? Look “normal” enough in public so that no one stared too long or asked if I was…

Several years ago, at a family reunion, I discovered something remarkable about my wife Jill’s approach to difficult conversations that has stayed with me ever since. This discovery has become even more important as Jill deals with the challenges of being gene-positive with Huntington’s disease (HD). At the reunion, Jill…

I can feel it before anyone says a word. It’s in the pause that comes after I mention Huntington’s disease. It’s in the quick scan of my body, my hands, my face, the way I shift my weight like they’re looking for proof. It’s in the softened voice, the…

If there’s one thing Huntington’s disease (HD) has taught me and my wife, Jill, who is gene-positive with the illness, it’s that rest isn’t a reward; it’s a necessity. Between the disease’s relentless advancement, the daily logistics of symptom management, and the invisible emotional toll, we sometimes forget that…

The thing about being present in public is that people think it’s just a mindset. Like you decide to show up, take a deep breath, smile, and you’re there — grounded, confident, fine. But when you live with Huntington’s disease, being present in public can feel like a full-time…

For years before her 2018 diagnosis with Huntington’s disease (HD), my wife, Jill, worked with children at a school. One of her fondest memories is of seeing shy children find their voice thanks to a teacher’s encouragement. “All they needed,” she said, “was for someone to say to them,…

Some days, my brain feels like it’s buffering. Not in a dramatic, emergency kind of way. It’s more like I’m standing in my kitchen with a cup in my hand, trying to remember why I walked in there in the first place. I can see what needs to happen next,…

When a building catches fire, most of us instinctively move back. We watch from the sidewalk, hoping the flames die down, grateful for any distance between us and the danger. Firefighters are different. They hear the alarm, size up the risk, and move toward the heat, knowing there are no…

Dating with Huntington’s disease (HD) has taught me how quickly people confuse honesty with a warning label. I used to believe that telling the truth early on in the process was the kindest thing I could do. I still believe in honesty, but I’ve learned that it doesn’t protect…