Columns

My wife, Jill, was diagnosed as gene-positive for Huntington’s disease (HD) in 2018, and our daughter, Alexus, was diagnosed the following year. Because HD runs in Jill’s family — multiple people on her father’s side of the family have battled it, including her dad — she’s…

Austedo XR, an extended-release oral formulation of Austedo (deutetrabenazine), is now commercially available in the U.S. as a treatment for adults with chorea, or uncontrolled muscle contractions, associated with Huntington’s disease. The new formulation is available in tablet strengths of 6 mg, 12 mg, and 24 mg,…

A former columnist for Huntington’s Disease News, Erin Paterson, tested gene-positive for Huntington’s disease (HD) in 2006. She’s also the founder of Lemonade Press, a social enterprise focused on empowering people through storytelling. Through writing and speaking about genetic disease, depression, and infertility, she hopes to…

Note: This story was updated May 16, 2023, to correct the duration of ANX005 infusions. Only the first loading dose of the therapy is given for 21 hours, with subsequent doses having a duration of four to five hours. The experimental therapy ANX005 safely leads to stabilization or improvements in…

I love clichés. I love to share these small, yet overly heard nuggets of wisdom whenever I can. Who cares if they prompt an eye roll or two? I use them to explain things so often that my entire family has come to expect it. When our dog, Baby…

Nonprofits around the world are hoping to “turn up the global volume” for Huntington’s Disease Awareness Month, an annual event in May to call attention to the disease, estimated to affect up to 7 per 100,000 people globally. In the U.S., about 41,000 Americans are affected by the disease,…

The Phase 3 PROOF-HD trial failed to meet its main goal of showing that pridopidine, Prilenia Therapeutics’ experimental therapy, could slow functional decline compared with a placebo for adults with Huntington’s disease. However, preliminary top-line data indicated a potential slowing of disease progression among patients who were…

I’m not what one would call a clean freak. I’m messy and always have been. Sometimes my mind goes so fast that I’ll put things down and forget where. I don’t mind my world being somewhat chaotic; in fact, I don’t really notice it until it’s so bad I…

Asklepios Biopharmaceutical (AskBio) has launched a first-in-human clinical trial testing AB-1001 — an experimental gene therapy designed to modulate cholesterol metabolism in the brain — in people with Huntington’s disease. The trial is currently recruiting participants at a site in Paris. It is open to adults, ages 18…

An encouraging number of clinical trials are currently recruiting, or soon will be, for people affected by Huntington’s disease (HD). I recently wrote about the CAP score, a mathematical calculation that many HD clinical studies use to find participants who are at comparable points along their HD…