As a caregiver to my wife, Jill, who is gene-positive for Huntington’s disease, I’ve learned that helping isn’t always as straightforward as it seems. Recently, as I watched her face scrunch up in frustration while she looked at her to-do list, I reminded her that she could…
“The brain is like a muscle. When it is in use we feel very good. Understanding is joyous.” — Carl Sagan A chance meetup last summer with a local in my community led to a slightly random conversation about brain donation. I was discussing a genetic test I…
The investigational gene therapy AMT-130 is slowing disease progression for people with early-stage Huntington’s disease, as well as lowering levels of neurofilament light chain (NfL), a marker of nerve cell damage. That’s according to two-year data from two Phase 1/2 clinical trials: one in the U.S. (NCT04120493)…
It’s been a hot summer so far, which isn’t the greatest weather for my wife, Jill, to deal with. She is gene-positive for Huntington’s disease, which causes her to have difficulty regulating her body temperature. But recently, a rainstorm was followed by a soft, summer breeze…
Huntington’s disease presents a complex range of behavioral, cognitive, physical, and psychological symptoms. It poses many challenges to families, friends, caregivers, and people who are living alone with this condition. Huntington’s has taken the lives of my dad, grandad, and great-grandmother. I tested negative for…
More than three months of treatment with WVE-003 safely leads to significant reductions in mutant huntingtin — the protein that toxically accumulates in Huntington’s disease — for people with early Huntington’s, while preserving levels of the healthy version of huntingtin and trends of slower brain tissue loss and clinical…
As my 60th birthday approaches in August, my wife, Jill, and our daughter, Alexus, have decided that we must celebrate in a special way. Because our schedules are free in mid-July, we’ll be getting together soon instead of next month. However, instead of throwing a party, they have…
I recently connected with patient advocate Tanita Allen through my work for Huntington’s Disease News. In May, for Huntington’s Disease Awareness Month, Tanita kindly shared the story of her own Huntington’s disease journey for this website’s Community Spotlight project. Huntington’s disease has affected several generations of my…
Neurocrine Biosciences is offering a new online educational resource called More Than HD that seeks to inspire and give hope to Huntington’s disease patients and their caregivers by helping them prepare for their journey with the disease. “It was important for us at Neurocrine to create More Than…
In our quiet moments together, my wife, Jill, often shares her deepest thoughts with me. Recently, one such conversation left a profound mark on my heart. Jill’s Huntington’s disease has shaped our lives and made every moment precious, but her perspective on the journey is a constant source…
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