The High Cost of Writing About Huntington’s Disease

I began this column about seven months after my wife, Jill, discovered she was gene-positive for Huntington’s disease (HD) in 2018. Every week since then, Jill and I discuss what I should write about, and this week was no different. As we brainstormed, Jill asked me a couple…

Clumps of protein resulting from HTT mutations, the underlying cause of Huntington’s disease, form distinct structures in different parts of the cell, according to detailed imaging analysis. The findings suggest these clumps form by different mechanisms and may require different therapeutic strategies to block their formation and toxicity that…

Shouting is a fantastic way to get someone’s attention. That’s why I propose we shout to get the attention of the U.S. Congress. Because May is Huntington’s Disease Awareness Month, my wife, Jill, who is gene-positive for Huntington’s disease (HD), came up with a video challenge to raise awareness…

Some 41,000 U.S. residents are thought to live with Huntington’s disease (HD), a rare progressive disorder that breaks down brain nerve cells. During May, and as part of Huntington’s Disease Awareness Month, the Huntington’s Disease Society of America (HDSA) is launching a robust social media initiative aimed at…

Ever since my wife, Jill, was diagnosed with Huntington’s disease in 2018, grocery shopping has became increasingly difficult for her — that is, until she discovered the power of noise-canceling headphones. Here’s what makes shopping difficult for her: People constantly invade her space, make a lot of noise, and…

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…

The experimental therapy pepinemab can aid cognition in people with early Huntington’s disease who showed signs of cognitive impairment when they started treatment, new analyses from the Phase 2 SIGNAL clinical trial indicate. Findings were presented at the virtual American Academy of Neurology 2022 Annual Meeting in the poster, “…

When I share with others that my wife, Jill, has Huntington’s disease (HD), I often receive a blank stare in return. Because it’s a rare disease, most people have never heard of it. When I tell them how terrible it is, they usually respond with expressions of sorrow. I…

The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations. The move is expected to…

The weather where I live in Maryland has been cold, gray, and rainy lately. A steady diet of warm, sunny weather remains a distant memory. The full glory of spring is on hold, as many trees and flowers have restrained themselves from blossoming into a full palette of colors. Days…