Even Caregivers Need Help Sometimes

Happy New Year! Now that 2021 is in the rearview mirror, I have a simple wish for 2022: a cure for Huntington’s disease, which my wife and daughter are gene-positive for. As much as I hope for that, I also spend a lot of time thinking about taking…

The experimental oral medication branaplam (LMI070) has been granted fast track designation by the U.S. Food and Drug Administration (FDA) as a potential treatment for Huntington’s disease, according to an announcement from the therapy’s developer, Novartis. This designation is designed to speed the development and review of…

AMT-130, an investigational gene therapy for the treatment of Huntington’s disease, was overall well-tolerated up to a year after treatment in the first patients to receive the therapy in a clinical trial. The new data, announced by AMT-130’s developer uniQure, cover the first four participants in a Phase…

Since my wife, Jill, was diagnosed with Huntington’s disease (HD) in 2018, she’s been concerned about something that plagued her father for a long time before he died from the same condition: weight loss. Jill’s father was in good health when he was diagnosed with HD, but during his…

I traveled last month to the University of Wisconsin-Madison to participate in an observational research study called PREVENT-HD. I’ve written about the importance of participating in trials, and the purpose of the PREVENT-HD study is to develop tools to find and track subtle, but measurable, changes in behavioral,…

Treatment with valbenazine significantly lessened chorea — a motor symptom characterized by jerky, unpredictable, and involuntary movements — in people with Huntington’s disease in the Phase 3 clinical trial KINECT-HD, according to an announcement from the therapy’s developer, Neurocrine Biosciences. Neurocrine now is planning to submit an…

Last week, my wife, Jill, who is gene-positive for Huntington’s disease, appeared on a Help 4 HD Live! podcast, which is an online radio program for the Huntington’s community. The program is hosted by Lauren Holder, who also is gene-positive for Huntington’s. Lauren reached out to Jill…

The Huntington Study Group is seeking 30 patients to join KINECT-HD2, an open-label study of oral valbenazine capsules for chorea, or jerky involuntary movements, in Huntington’s disease, a press release states. KINECT-HD2 is an extension study of KINECT-HD (NCT04102579), a Phase 3 clinical trial that tested…

Years ago, as watching videos on the internet became more popular, I realized I needed to broaden my skills as a print journalist to compete and thrive in a rapidly developing multimedia world. So, I took a course at the Poynter Institute that taught me how to tell a…

A Phase 1/2 clinical trial testing uniQure’s potential gene therapy AMT-130 in people with Huntington’s disease can continue enrollment, according to a positive review by the study’s independent data safety monitoring board (DSMB). The DSMB reviewed safety data from four patients given the higher dose of the therapy, which…