Today, Oct. 11, is my 37th birthday. Where does the time go? In my last column, I wrote about my lengthy journey since my mom was diagnosed with Huntington’s disease (HD) in 1995. As I sit back and reflect, I realize how much my own genetic test…
Columns
My wife, Jill, and I were recently talking about an encounter I had. As sometimes happens, a result of the conversation with Jill was a lesson that developed over the next few days about Jill’s terminal illness. The conversation centered on feeling belittled in my work as a…
The recent approval in the U.S. of Ingrezza (valbenazine) for adults with Huntington’s disease-associated chorea means patients now have access to a treatment option that’s likely easier to take, according to the chief medical officer of Neurocrine Biosciences, the therapy’s maker. “Ingrezza is always one capsule,…
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…
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…
Recent Posts
- The real harm of medical gaslighting and what we can do about it
- Soy compound genistein shows survival benefits in Huntington’s mice
- My wife taught me how to process unwanted thoughts after her diagnosis
- Part of advocacy is challenging assumptions about Huntington’s
- Targeting a protein fragment may slow Huntington’s progression: Study