Columns

Accepting Huntington’s Means Letting Go of the Wheel

Family has always been important to my wife, Jill. However, she wouldn’t plan many trips due to concerns about travel costs. Jill’s attitude shifted after she tested positive for Huntington’s disease in 2018. She saw every long holiday weekend as an opportunity to visit our loved ones. Because our…

Things I’m Grateful For

I tend to be more grateful these days than I used to be, and to help you understand why, I’ll share a little story. I’ll also list several reasons why I’ve been particularly grateful lately. On Christmas Eve, I had to be at work at 10:30 p.m. to shoot photos…

Even Caregivers Need Help Sometimes

Happy New Year! Now that 2021 is in the rearview mirror, I have a simple wish for 2022: a cure for Huntington’s disease, which my wife and daughter are gene-positive for. As much as I hope for that, I also spend a lot of time thinking about taking…

The Importance of a Spinal Tap in HD Research

I traveled last month to the University of Wisconsin-Madison to participate in an observational research study called PREVENT-HD. I’ve written about the importance of participating in trials, and the purpose of the PREVENT-HD study is to develop tools to find and track subtle, but measurable, changes in behavioral,…

Valbenazine Eases Chorea in Trial; FDA Submission Expected Next Year

Treatment with valbenazine significantly lessened chorea — a motor symptom characterized by jerky, unpredictable, and involuntary movements — in people with Huntington’s disease in the Phase 3 clinical trial KINECT-HD, according to an announcement from the therapy’s developer, Neurocrine Biosciences. Neurocrine now is planning to submit an…

Mental Videos Make the Memories Come Alive

Years ago, as watching videos on the internet became more popular, I realized I needed to broaden my skills as a print journalist to compete and thrive in a rapidly developing multimedia world. So, I took a course at the Poynter Institute that taught me how to tell a…

Love Is Stronger Than Huntington’s Disease

By the time you read this, an important day in my family’s life will have occurred: Alexus, our only daughter, got married on Nov. 25. She and her now husband, René, met in their senior year of college and have built a beautiful life together since then. They decided to…