Roche has discontinued dosing in the Phase 3 GENERATION HD1 trial of its investigational therapy tominersen in adults with Huntington’s disease. The decision was made after a pre-planned review of trial data by an independent data monitoring committee, which issued a “no go” recommendation based on tominersen’s potential benefit/risk…
My wife, Jill, and I do not dwell on her Huntington’s disease (HD). We know it’s there, of course, lurking like gray, angry clouds and chilly air that say winter is coming. But from time to time, we do talk about it. The other night, Jill used a…
Stalled protein-building may underlie Huntington’s disease, according to data from a recent study. The findings showed that the mutated huntingtin protein, which is at the heart of the disorder, slows down ribosomes, the small cell machinery structures responsible for building new proteins. According to investigators, knowing this and understanding…
One of the most inspirational definitions of kindness I’ve ever read comes from Father Lawrence G. Lovasik’s book “The Hidden Power of Kindness“: “Not only is kindness due to everyone, but a special kindness is due to everyone. Kindness is not kindness unless it is special. Its charm…
I like to keep things organized. Everything should have a place, even if it’s on the floor next to my bed, like my clothes. Even my problems have a place: Each one has a box. No, I don’t have a box sitting around in my…
I like learning, especially from smart people. My wife, Jill, is one of the smartest I know. With that in mind, I wanted her wisdom from the years she spent caring for her father, who had Huntington’s disease (HD) and died in 2011. Following are some of the lessons…
Women with Huntington’s disease have worse motor, cognitive, and depressive symptoms than men with the condition, according to data from the global Enroll-HD observational study. Notably, no sex-specific differences were found for age at diagnosis and symptom progression over the four years of follow-up. These findings help to increase…
I have previously discussed in this space my wife Jill’s dislike of visiting the doctor. I use the word “dislike,” but she would use the word “hate.” Since Jill was diagnosed with Huntington’s disease in 2018, I try to go with her to appointments when she asks me to.
An alliance of Huntington’s disease (HD) organizations in the U.K. is calling for patient contributions to a project that intends to show the world what it’s like to live with the neurodegenerative disorder. Through the end of May, the “living history” project is collecting photos, poems, or other works…
Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, blue, and purple lights side-by-side? These are the colors most often used to represent Rare Disease Day. This…
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