Like many of you reading, I am from a Huntington’s disease (HD) family. I learned at the young age of 9 that my mom would progressively, slowly lose her ability to do absolutely everything. Around that same time, I also learned I had a 50% chance of inheriting that same…
The anniversary of my sister’s death is coming up in about a month. Rose died on Halloween last year after a massive red oak tree fell on the car she was in during a fierce storm. The car was parked in her driveway, and the tree was from a…
Prilenia Therapeutics, in partnership with the Huntington Study Group (HSG), has launched the Phase 3 PROOF-HD clinical trial to evaluate the company’s lead experimental oral therapy, pridopidine, in people with early stage Huntington’s disease. Pridopidine “is a first-in-class [therapy] candidate, with promising previous clinical results and…
My wife, Jill, and I have not been to the local movie theater in months. It’s been so long that we can’t remember the last movie we saw there. By contrast, we averaged about two movies a month before the pandemic struck. With the recent reopening of our town’s theaters,…
A new book is available to help children cope when a family member has Huntington’s disease. Called “Harry needs a hug: A story for children learning to deal with Huntington’s Disease,” the 32-page book was written by Emma Terranova, founder of Campaign For My Brain, a United…
This week, I have my first therapy appointment in a while. I hope therapy will give me a structured place to talk about Huntington’s with someone not impacted by it. While my coping strategies have worked so far, I would benefit from someone neutral to talk to. Plus,…
I stumbled into my future profession when I took a creative writing class as a junior in high school. I took the class because it was an elective, something easy. In other words, it was what my teenage self considered a “blow-off,” something that didn’t require studying. Studying, I thought…
Behavioral changes due to early onset Huntington’s disease and problems with school, and social and family life are common, particularly among pediatric patients, according to a case series study in Germany. Socio-medical problems in these children were associated both with their own disease, and with the additional burden of parents…
One of summer’s guilty pleasures is watching mindless movies. On a recent weekend, Jill and I watched “Bill and Ted Face the Music,” which is so egregiously and heinously bad, it’s good, dude. (This is how the time-traveling characters talk to each other. Needless to say, the dialogue is…
An enzyme called TANK‐binding kinase 1 (TBK1) can lower levels of the mutant huntingtin protein — which underlies the development of Huntington’s disease — and prevent its aggregation in cellular and animal models of the disease, a study reports. Data showed that TBK1 is able to do this by…
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