Talk therapy is great, but finding someone who understands you and meets your needs is the key to its success. When my wife, Jill, was diagnosed with Huntington’s disease (HD) in 2018, the doctor recommended that she see a therapist. While Jill had nothing against seeing someone for…
Columns
I remember my family speaking openly about Huntington’s disease (HD) throughout my childhood. Our paternal great-grandmother had passed away before my brother and I were born, and our paternal grandfather passed when we were very young. Both had HD. Growing up, my brother and I heard stories about our…
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…
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…
Recent Posts
- What the holidays mean when living with Huntington’s disease
- $12M grant will back first trial of stem cell therapy for Huntington’s
- A tribute to the kindness of strangers in life with Huntington’s
- How to support someone who is planning for future care
- Antipsychotics improve functional capacity, independence in HD
- Despite dwindling resources, hope endures among researchers
- The ‘invisible’ symptoms of Huntington’s that people don’t see
- Genetic variant delays Huntington’s onset by up to 23 years: Study
- Watching Huntington’s switch roles in our marriage was jarring
- The gift of community is what I’m most thankful for this year