Columns

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…

In a recent column, I wrote about the high emotional cost my wife, Jill, and I face by writing a weekly column about her journey being gene-positive for Huntington’s disease (HD). It doesn’t help that our daughter is also gene-positive. Jill wondered if our weekly column was…

In my previous column, I shared that the U.S. Food and Drug Administration (FDA) accepted the request submitted by my fellow advocates and me to host a patient listening session focused on people who are gene-positive for Huntington’s disease (HD), but have not yet developed symptoms. Our session is…

A recent text message reminded me that just because someone has Huntington’s disease (HD) doesn’t mean it will cause their death. It also helped me better understand the importance of showing someone how much you love and care for them — especially when they’re not feeling well. The text…

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…

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…

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 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…