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Since my wife, Jill, was diagnosed with Huntington’s disease (HD) in 2018, she’s been concerned about something that plagued her father for a long time before he died from the same condition: weight loss. Jill’s father was in good health when he was diagnosed with HD, but during his…

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,…

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…

Last week, my wife, Jill, who is gene-positive for Huntington’s disease, appeared on a Help 4 HD Live! podcast, which is an online radio program for the Huntington’s community. The program is hosted by Lauren Holder, who also is gene-positive for Huntington’s. Lauren reached out to Jill…

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…

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…

It’s somehow already Thanksgiving week here in the U.S. Where did the year go? This is the perfect time to reflect on the year and count our blessings. Nobody’s life is perfect, and those of us in the Huntington’s community have definitely had our fair share of struggles and tough…

Since my wife, Jill, tested positive for Huntington’s disease (HD) in 2018, I’ve learned a lot about the disease and its symptoms. Prior to her diagnosis, Jill’s HD journey started with depression, similar to many others who suffer from Huntington’s. I’ve written about this topic before, with Jill’s…

We live in a house with hardwood floors and three flights of wooden stairs. For my wife, Jill, who is gene-positive for Huntington’s, and our dog, this setup is a danger zone. Let me explain. The floors are beautiful, but they are slippery. We are reminded of how…

I never knew what participating in medical research was all about when I was growing up. For 10 years, I was an active member of the Huntington’s disease community, but I had no clue about research. One reason was because from 1999 to 2009 there wasn’t much research to participate…