Ken To lives in Hong Kong and is a primary caregiver for his mother, Then Dji Fong, who was diagnosed with Huntington’s disease in 2003. He is also at risk for inheriting the disease. Advocacy is an important part of Ken’s life. He witnessed the founding of the Chinese Huntington’s…
A number of observational studies meant to improve knowledge about Huntington’s disease — and aiming to inform clinical trials, generate data from patients of all ages, and help speed the development of new treatments — are now enrolling participants in the U.S. Several of these studies were described by…
Several treatments aiming to reduce levels of mutant huntingtin (mHTT), the protein that drives Huntington’s disease, are being tested in clinical trials or may soon enter clinical testing. Company representatives described those therapies in a luncheon session at the 40th annual Huntington’s Disease Society of America (HDSA) convention,…
Speech therapy can help people with Huntington’s disease reduce swallowing problems, communicate better, and manage cognitive difficulties. That was the message of a live-streamed talk, given by a speech therapist — also known as a speech-language pathologist or SLP — at the 40th annual convention of the…
Taking steps to plan ahead, including having difficult discussions early on, can help people with Huntington’s disease and their families navigate life as the disease progresses and care needs evolve. That’s according to speakers at the Huntington’s Disease Society of America (HDSA) annual convention, held June 26-28 in…
Treatment with a nonhallucinogenic psychedelic compound may help to ease depression in people with Huntington’s disease, according to experiments done in a mouse model. The research was done by Kaleigh Hanley, a scientist at the University of Central Florida’s College of Medicine. Hanley is one of the recipients of…
People affected by Huntington’s disease often experience stigma, but — according to two social workers, and patients themselves — this can be combated by building loving communities and being proactive about sharing experiences and asking for support. At the 40th annual convention of the Huntington’s Disease Society of…
The Huntington’s Disease Society of America (HDSA) is pushing to get 10 bills that could help provide support for people with Huntington’s disease passed in the U.S. Congress. The nonprofit is also advocating against changes to Medicaid that are currently being considered as part of the 2025 budget…
Whenever there’s another failed clinical trial for Huntington’s disease, my wife, Jill, who is gene-positive, and I always try to find a silver lining. With each year that passes, doing that becomes more difficult. Last fall, after another trial failed, Jill said to me: “Sometimes it’s due to…
Kasia Rothenberg, MD, PhD, is my neuropsychiatrist and one of the most compassionate, skilled providers I’ve had on my care team since being diagnosed with Huntington’s disease (HD). I am proud to share her wisdom with the broader Huntington’s community in this special interview. Rothenberg is the co-director…
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