Long-term treatment with Austedo (deutetrabenazine) safely led to sustained reductions in chorea for people with Huntington’s disease, including those who had switched from treatment with Xenazine (tetrabenazine). That’s according to about three years of follow-up data in the Phase 3 ARC-HD trial (NCT01897896), a study jointly conducted…
Recently, my wife, Jill, who is gene-positive for Huntington’s disease (HD), took a trip to Boston to participate in an observational HD study. She had been looking forward to it in part because she’d be able to visit her brother and his family and stay at our daughter‘s…
A data safety monitoring committee has recommended that enrollment of the highest dosing group resume in the European Phase 1/2 trial of AMT-130 in people with Huntington’s disease, but with additional safety measures in place. UniQure, the investigational treatment’s developer, announced in August that enrollment in…
Tiny moments. Life is full of them. For instance: I was not expecting the phone call. My wife, Jill, always texts me when she wakes up. She never calls. But during a recent morning, my cellphone rang while I was at work, and when I picked up, I saw…
Ever since my mom was diagnosed with Huntington’s disease (HD) in 1995, I’ve been attending all types of support, fundraising, and educational events. I’ve had the honor of traveling the world and meeting people from many countries who’ve been affected by HD. When I was young, my parents…
A greater number of CAG repeats within the HTT gene — the genetic cause of Huntington’s disease — is linked to earlier disease onset and death, but is not an independent predictor of mortality in people with the neurodegenerative disease, a study shows. These findings suggest that “non-genetic factors…
My wife, Jill, and I selected “A Family Tradition” as the name of this column because of the genetic nature of Huntington’s disease (HD). If someone has the HD gene mutation, their children have a 50% chance of inheriting the disease. It’s a tradition that no one…
The Hereditary Disease Foundation (HDF) is recognizing two scientists, Steven Finkbeiner and Natalia Barbosa, for their leadership in Huntington’s disease research. Both will speak at the organization’s 2022 Virtual Gala, set for Nov. 10 starting at 7 p.m. ET. The free, hourlong event will cover…
Second in a series. Read part one. As my wife, Jill, experiences Huntington’s disease (HD) progression, we must prepare for all aspects of her care. Recently, she wanted to start thinking about our financial future. She knows that HD can be a financial burden, as the rare…
First in a series. My wife, Jill, who was diagnosed with Huntington’s disease (HD) in 2018, doesn’t like to think about what’s in store for her. She knows her illness will progress in cruel ways, so she prefers to live in the present moment. But recently,…
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