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My marriage has always been a partnership. I have strengths where my wife, Jill, has weaknesses, and vice versa — until Huntington’s disease (HD) started affecting her mental state and abilities, that is. Jill, who was diagnosed with HD in 2018, likes to say that the…

I recently watched a webinar hosted by the Huntington’s Disease Society of America that highlighted the new Roche/Genentech clinical study, GENERATION HD2 (NCT05686551), which is testing tominersen in people with Huntington’s disease (HD). I was enthused to hear all of the questions from the community that…

Using machine learning, a form of artificial intelligence, researchers were able to cluster people with Huntington’s disease into three groups based on the speed at which the disease progresses, a study showed. “Machine learning approaches such as this could be considered for application in real-world clinical practice to support…

As John Lennon once sang, “Life is what happens to you while you’re busy making other plans.” Well, life happened — again. At the end of February, my wife, Jill, and I had planned to go to Capitol Hill in Washington, D.C., to lobby several congressmen as part…

Enrollment is underway in a Phase 2 clinical trial testing Roche’s therapeutic candidate tominersen in people with early manifest Huntington’s disease and those in the prodromal phase of the disease, when hallmark disease symptoms are not yet present. The study, dubbed GENERATION HD2 (NCT05686551), aims…

Over the past year, Huntington’s disease has begun to affect my gene-positive wife, Jill, in various ways. Anyone who’s met Jill would tell you that she loves knowledge. As a lifelong journalist, I share the same passion. However, I don’t want my knowledge about Huntington’s disease to…

The risk of potentially having Huntington’s disease (HD) if you have an inherited gene mutation has often been described as a coin toss — you either have the mutant gene that causes HD or you don’t. Your kids will either be at risk or they won’t. It’s easy…

The European Medicines Agency (EMA) has granted orphan drug status to SAGE-718 as a potential therapy for Huntington’s disease. The experimental therapy is being developed by Sage Therapeutics for treating cognitive impairment associated with Huntington’s and other neurological disorders. Orphan drug status is given to treatments with the potential to improve…

On a recent afternoon while I was at work, my wife, Jill, sent me an alarming text. “I’ve had a little issue with a knife and my thumb,” she wrote. “If it hasn’t stopped bleeding by the time you get home tonight, I may need to get stitches.” I…

Austedo XR, a new extended-release formulation of Austedo (deutetrabenazine) has been approved by the U.S. Food and Drug Administration (FDA) to treat adults with chorea — involuntary muscle contractions — associated with Huntington’s disease. Austedo XR contains the same active agent as the original therapy, but is taken just once a day, with…