Columns

When my wife, Jill, was diagnosed with Huntington’s disease (HD) in 2018, she had been feeling anxious and depressed. It was one of the reasons she decided to go through with genetic testing, as these are common symptoms that act as warning signs for gene-positive…

The success of CDNF — fully, cerebral dopamine neurotrophic factor — in improving motor coordination in a mouse model of Huntington’s disease supports this protein’s development as a potential therapy for the rare disorder, according to a new study. In the study, CDNF was injected into the brain of…

I’ve always loved television shows about the Wild West and cops who are smart and funny. There’s a swagger about the characters that I always wanted to embody. Plus, they always beat the bad guys. Since my wife, Jill, was diagnosed with Huntington’s disease in 2018, we have…

I attended my first Huntington’s Disease Society of America (HDSA) Annual Convention when I was 9 years old, and have since gone more than 10 other times. Families, clinicians, healthcare professionals, pharmaceutical companies, and more are present at the three-day event, which changes location every year. The convention is…

The oral therapy valbenazine significantly reduces involuntary muscle contractions, or chorea, and patient-reported disease burden in people with Huntington’s disease, according to results from the Phase 3 KINECT-HD clinical trial. Top-line data were announced by Neurocrine Biosciences, the therapy’s manufacturer, in 2021. The full findings have…

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…