I love stories. It’s why I have a passion for reading. I enjoy being transported to another world by the creative ways writers string words together. One of the many reasons I love my wife, Jill, is because she’s an incredible storyteller. She could make walking up the stairs…
Columns
I joined the war against Huntington’s disease (HD) back in 1995, after my mom, Debbie, underwent genetic testing that confirmed she was gene-positive for HD. Her father also carried the genetic mutation, but he passed away in 1990, when I was only 3 years old. I was just…
Alternative splicing, a molecular process that’s crucial for genes being “read” to produce proteins, is dysregulated in Huntington’s disease from the early stages of neuronal development, a study indicates. Notably, splicing changes were found to be dependent on the length of CAG repeats in the HTT gene — the cause…
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,”…
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…
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