Learning to live in the present includes actually doing it

When my wife, Jill, was diagnosed with Huntington’s disease (HD) in 2018, I thought I had already learned the lesson about appreciating loved ones while they are alive. Almost 20 years ago, my eldest sister, Nancy, died of cancer. Then, in the past 13 years, my father, mother, and…

I’ve recently seen some posts in Facebook groups and Reddit threads about the emotional toll of testing negative for Huntington’s disease (HD). Some share that they no longer feel a part of the HD community. Others say they’re exhausted after running so fast and for so long from this…

Caregivers of people with Huntington’s disease want support programs that will help them in balancing their own care needs over time with those of the patient, often a family member. This theme emerged from caregiver focus groups conducted in the Netherlands, where support was considered effective if it would…

My wife, Jill, is lucky to come from a loving family. Her relatives are the kind of people who would help anyone in any way they can. I’ve been blessed to be welcomed by them. After Jill was diagnosed with Huntington’s disease (HD) in 2018, our daughter, Alexus…

With early data on AMT-130 for Huntington’s disease reportedly looking promising, uniQure said it’s planning to meet early next year with regulatory authorities to discuss the late-stage development of its gene therapy candidate. By that time, more data on the ongoing Phase 1/2 clinical trials testing the therapy…

My wife, Jill, and I recently celebrated 15 years of marriage. When we said “I do” all those years ago, I couldn’t have guessed what would eventually happen to her: She is being robbed of her words. Or, as she puts it, words are “escaping” her. Jill will be…

Increased levels of the stress response protein MTF1 suppressed the toxic effects of the mutant huntingtin (mHTT) protein — the underlying cause of Huntington’s disease — in cellular and animal models of the neurodegenerative condition, a study showed. Specifically, MTF1 was found to counteract mHTT-associated oxidative stress, a type…

My wife, Jill, has always been stubborn, to put it lightly. She won’t admit that something is too hard for her. Ever. “No, I got it” is her favorite saying. But since she was diagnosed with Huntington’s disease in 2018, I haven’t been sure if stubbornness is…

People carrying fewer Huntington’s disease-causing CAG repeats in the HTT gene — who traditionally are thought to have milder disease — show similar cognitive deficits to those with more CAG repeats, a study found. However, patients with fewer repeats are less likely to show Huntington’s characteristic involuntary muscle contractions,…

The other day, a lightbulb went off when I thought about the things that Huntington’s disease might rob from me. I’m married to someone who was diagnosed with Huntington’s in 2018, and I often focus on what the disease will steal from her (or us). But I hadn’t…