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“You pay for it now, or you pay much more later.” My wife’s father said that often. Ken wasn’t a policymaker or a scientist. He was a dad who lived and died with Huntington’s disease, passing in 2011 from complications of the same illness that now tightens its…

When I was diagnosed with Huntington’s disease (HD), I thought the hardest part would be the symptoms: the involuntary movements, the mood changes, the balance issues, the unpredictable fatigue. But I learned quickly that the stigma surrounding a rare disease can weigh just as heavily. The stares, the whispers,…

Second in a series. Read part one. Last week, I introduced Christy Dearien, the author of “Livable Lives: Conversations with the Huntington’s Disease Community.” The book explores how Huntington’s disease (HD) affects relationships, identity, and life decisions. My wife and daughter, as well as Christy’s…

When I stepped off the plane in Boston, I felt a wave of gratitude. Everything about this trip felt first class, from the thoughtful arrangements to the sense that every moment had purpose. I had been invited to speak at Wave Life Sciences, a biotechnology company devoted to advancing…

First in a series. My wife, Jill, and I met Christy Dearien last year at a Huntington’s disease (HD) event in Maryland. Like Jill, Dearien’s brother is gene-positive for HD. Dearien had just published a book, “Livable Lives: Conversations with the Huntington’s Disease Community,” exploring how this…

Walking into the same lecture hall at Case Western Reserve University where I spoke last October felt like déjà vu in the best way. The rows of white-coated medical students, about 200 this time, buzzed with that unmistakable energy of first-year enthusiasm. Their notebooks were open, laptops glowing, faces eager…

I got home from work the other day and caught a glimpse of a relic on our television set: a 5 p.m. local newscast. Stranger still, my wife, Jill, was actually leaning forward and watching it. On the newscast, some government officials were criticizing diversity, equity, and inclusion, or DEI,…

October feels like a month that breathes differently. The air turns cooler, the light softens, and the energy shifts from summer’s urgency to something gentler. Trees let go of their leaves without hurry, the days shorten, and a stillness settles in. For me, living with Huntington’s disease, that stillness…

Huntington’s disease (HD) has cast a long shadow over my wife Jill’s family tree. When she was diagnosed in 2018, we knew we’d be fighting the same enemy that had taken her father and many other relatives on his side of the family. Today, we focus on what gives…

Some days, the world feels too far away, too cold, or simply too heavy to face. With Huntington’s disease, those days come more often than they used to. Sometimes it’s because my balance feels off, and icy sidewalks feel risky. Other times, my movements are unpredictable, and I’m not…