Columns

My marriage has always been a partnership. I have strengths where my wife, Jill, has weaknesses, and vice versa — until Huntington’s disease (HD) started affecting her mental state and abilities, that is. Jill, who was diagnosed with HD in 2018, likes to say that the…

I recently watched a webinar hosted by the Huntington’s Disease Society of America that highlighted the new Roche/Genentech clinical study, GENERATION HD2 (NCT05686551), which is testing tominersen in people with Huntington’s disease (HD). I was enthused to hear all of the questions from the community that…

As John Lennon once sang, “Life is what happens to you while you’re busy making other plans.” Well, life happened — again. At the end of February, my wife, Jill, and I had planned to go to Capitol Hill in Washington, D.C., to lobby several congressmen as part…

Over the past year, Huntington’s disease has begun to affect my gene-positive wife, Jill, in various ways. Anyone who’s met Jill would tell you that she loves knowledge. As a lifelong journalist, I share the same passion. However, I don’t want my knowledge about Huntington’s disease to…

The risk of potentially having Huntington’s disease (HD) if you have an inherited gene mutation has often been described as a coin toss — you either have the mutant gene that causes HD or you don’t. Your kids will either be at risk or they won’t. It’s easy…

On a recent afternoon while I was at work, my wife, Jill, sent me an alarming text. “I’ve had a little issue with a knife and my thumb,” she wrote. “If it hasn’t stopped bleeding by the time you get home tonight, I may need to get stitches.” I…

As a lifelong advocate in the Huntington’s disease (HD) community, fellow Huntington’s Disease News columnist B.J. Viau, whose late mother had HD, knows that genetic testing is a life-changing, emotional, and difficult experience for those who are at risk for this rare…

My objectives in this column are to acknowledge two upcoming holidays: Valentine’s Day, which my wife, Jill, doesn’t believe in (she thinks it’s manufactured and that love should be celebrated every day), and Rare Disease Day, on Feb. 28, which raises awareness and prompts change for…

Because my wife, Jill, has Huntington’s disease (HD), my roles include being her caregiver. With National Caregivers Day coming up on Feb. 17, I thought it would be fitting to share some advice from fellow caregiver and author Lea Zikmund, who published a book last year…

Huntington’s disease (HD) is hereditary. Because the father of my wife, Jill, was gene-positive for HD, she knew she had a 50% chance of getting the disease. Years ago, Jill told me to be honest with her. “If you think I’m showing symptoms, I want you to…