Tomorrow, Feb. 28, I’ll celebrate a milestone that once seemed impossible: my 50th birthday. This date is deeply meaningful and significant for me. Just a day away from a leap day, it has always been a reminder to me of life’s unpredictability. But there’s another, even deeper correlation: Feb. 28…
Specific genes involved in repairing mismatched DNA contribute to the development of Huntington’s disease by driving fast somatic CAG repeat expansion — a phenomenon in which Huntington’s-causing mutations grow, or expand, during a person’s lifetime, scientists report. Their study, done in a mouse model of Huntington’s, showed that targeting…
I recently learned something valuable: Not every item we buy is made to accommodate people with disabilities. This realization came with a mix of frustration and enlightenment, sparked by something as mundane — and essential — as a computer screen. My epiphany started when my wife‘s laptop broke, the…
Valentine’s Day is often associated with love, chocolates, and grand romantic gestures. But for me, this year, it became something much more profound — an unforgettable day of relief, gratitude, and the reaffirmation of hope. It was the day my nephew DeMarco Duhaney learned he was free from Huntington’s…
While the vast majority of Huntington’s disease patients in North America have the uncontrolled and jerky movements known as chorea at clinically relevant levels, about a third of these people are getting medications specifically for this motor symptom. Among treated patients, about half are prescribed VMAT2 inhibitors, the…
As we approach Rare Disease Day on Feb. 28, I find myself reflecting on the journey of my wife, Jill, with Huntington’s disease (HD) and the struggles that families affected by genetic conditions face. One issue I’m focused on is a critical gap in healthcare policy that continues to…
The Huntington’s disease (HD) community is a family bound together by shared experiences, mutual understanding, and unbreakable ties of support. Within this family, certain individuals shine in ways that leave an indelible mark on our hearts. My dear friend Roy Nierenberg was one of those bright lights — an…
Pediatric-onset Huntington’s disease is more severe than its adult-onset form, with faster and more extensive shrinkage of brain regions involved in movement, an imaging study has found. Atrophy, or a loss in brain volume, “was remarkable and more severe” in patients with pediatric-onset disease compared with adult-onset Huntington’s, the…
For Valentine’s Day each year, I write my wife, Jill, something romantic. It’s my way of expressing the depth of my love for her as she battles Huntington’s disease, an inherited neurodegenerative terminal illness. Each of the columns, which often are in the form of a play, has been…
For as long as I can remember, the Lunar New Year has held a special place in my heart. Every year since 2008, I’ve made it a tradition to celebrate the occasion with a meal at one of the most authentic Chinese restaurants in my town. This year was no…
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