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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,…

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…

Our Home Is a Potential Danger Zone

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…

Why I Take Part in Huntington’s Disease Research

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…