One-year results from the Phase 2 PIVOT-HD clinical trial testing PTC Therapeutics’ Huntington’s disease treatment PTC518 are expected in the second quarter. That’s according to an update from PTC, which also noted that in a December meeting with the U.S. Food and Drug Administration (FDA), the agency…
If I ever need a short, concise way to describe something, I consult my wife, Jill. So when a friend asked Jill to describe some of the challenges she’s faced with Huntington’s disease, she began with one of its most devastating symptoms: the gradual loss of cognitive function. Jill shared…
As the snow melts and the first flowers bloom, I welcome spring as a season of renewal. For me, spring cleaning isn’t just about scrubbing floors and reorganizing closets; it’s about decluttering my mind, refreshing my body, and realigning my spirit. Living with Huntington’s disease means that every season…
LETI-101, an experimental gene-editing therapy for Huntington’s disease, showed promising proof-of-concept effects in mouse and cell models by reducing levels of the disease-causing mutant huntingtin (HTT) protein, while preserving HTT’s healthy version. In nonhuman primates, the therapy showed good safety and distribution across brain regions profoundly impacted by Huntington’s. The…
Two weeks before Valentine’s Day, my wife, Jill, approached me with an unexpected request: “Let’s go away for Presidents Day weekend.” When I hesitated, citing work deadlines, her expression changed. “I’m feeling bad juju about being home,” she admitted quietly, a statement that immediately concerned me given her ongoing battle…
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…
Get regular updates to your inbox.
