I’ve learned a lot from my wife, Jill, who is gene-positive for Huntington’s disease (HD), about the importance of the phrase “I promise.” In the past, I often made promises without considering what they meant to others. As a child, I’d say, “I promise I’ll clean my room,”…
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The U.S. Food and Drug Administration (FDA) will review Neurocrine Biosciences’ application of a new oral granule formulation of Ingrezza (valbenazine) for involuntary muscle contractions, or chorea, in adults with Huntington’s disease. The therapy was recently approved in the U.S. for Huntington’s-associated chorea in the form…
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…