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Emily Zivin is a licensed clinical social worker at Northwestern Memorial Hospital’s Movement Disorders Center in Chicago, one of the Huntington’s Disease Society of America’s Centers of Excellence. My wife, Jill, and I know her from Jill’s visits there. We find her to be effervescent, highly knowledgeable,…

One summer when I was in middle school, my parents and I went to Florida to visit family. On a gorgeous day (well, as much as wet heat can be gorgeous during the summer), my mom, dad, and I went to Marina Jack…

Recently, our daughter, Alexus, came home for a weekend visit. It was wonderful, and the weather was perfect. We ate delicious food and had one big ball of fun. We are lucky to live in an area with many things to do. The weather has been so gray lately, but…

Because Feb. 29 is Rare Disease Day, I thought it would be a good idea to talk to my wife about what makes her so rare. Jill was diagnosed with Huntington’s disease in 2018. In the U.S., the number of people who have the disease is about…

I walked through the door of my condo at 9 p.m., kicked off my running shoes, and dropped my gym bag on the floor. Crap, he’s not back yet, I thought to myself. I had just returned from my fifth run of the week. I was beating down my body…

A few months ago, my boyfriend’s Philosophy of Technology class planned a debate about the ethics of gene editing. I told him that I was a perfect case study to bring up since gene editing opens avenues for a potential Huntington’s disease cure.

Valentine’s Day, a holiday my wife doesn’t believe in, has come and gone. Jill sees the day as a manufactured holiday. She believes that every day should be like Valentine’s Day — in other words, you should show love every day to the ones you love. We don’t make grand…

As most of you know, my wife and daughter tested positive for Huntington’s disease. They have witnessed the brutality that Huntington’s can inflict, and they have every right to curl up in bed every day and cry. But they don’t. They get up and continue forward with what I…

This week, I read two articles that were sent to me describing scientific breakthroughs regarding possible treatments for Huntington’s. The first described a case study recently published in the journal Psychiatry and Clinical Neurosciences. It…

I’m not a nurse or a social worker. In other words, I haven’t received formal training in caregiving from a college or a university. But I do feel that I’m prepared to do well as a caregiver because of the training I received as a child. I grew up in…