After 15 years of marriage, I was finally able to persuade my wife, Jill, to join me in exploring my love of reading. I hope that despite her Huntington’s disease diagnosis, she will never stop reading. I’m an avid reader. If you ask Jill, she’d say that’s an…
The benefits of Ingrezza (valbenazine) for people with Huntington’s disease — reductions in uncontrolled movements and gains in clinician- and patient-reported health — were seen two weeks after starting treatment and maintained for up to three months, according to new KINECT-HD trial analyses. Ingrezza was cleared last month…
In the summer of 2022, my wife, Jill, and I attended an eye-opening event that made me understand exactly what Huntington’s disease (HD) does to a loved one. It was a family reunion hosted by Jill’s paternal relatives. Her father had HD, as do multiple people on his…
Note: This column was updated Sept. 1, 2023, to correct that phase 1 clinical trials do involve human participants. I’ve always felt that the most impactful way for me to accelerate the development of new treatments for Huntington’s disease is to quicken recruitment for clinical trials. When such…
The genetic mutation behind Huntington’s disease may cause neurodegeneration through the production a toxic form of the huntingtin protein, but abnormally long RNA molecules that form gel-like structures that gum up protein production might play a role too. These are the findings of a new study that’s part of…
My wife, Jill, comes from a big family. She likes to joke that if she threw a dart at a map, someone from her family would live there. She loves to visit them, but lately, there’s been a cost for doing so. I always appreciate her family because…
The once-daily oral therapy Ingrezza (valbenazine) — already marketed in the U.S. as a treatment for a movement disorder — has now been approved by the U.S. Food and Drug Administration (FDA) for chorea in adults with Huntington’s disease. Chorea, characterized by uncontrolled, jerky movements that can…
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…
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