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Thirteen years ago, my good friend Matt Ellison and I started to form what is now the Huntington’s Disease Youth Organization (HDYO). Matt and I both grew up with a parent who had Huntington’s disease (HD), so our mission with the nonprofit was to support, educate, and…

The other day, I heard what every husband wants to hear from his wife: “Honey, I love you, but you’re being ridiculous.” The day had started off uneventfully. It was a Saturday morning, and I woke up early to watch a soccer game on TV. The earlier the better, since…

The biopharmaceutical UCB and Aitia have joined forces to accelerate the development of a novel Huntington’s disease treatment. The collaboration will harness Aitia’s artificial intelligence (AI) technology to identify new targets and therapies for Huntington’s that will be further validated using UCB’s expertise in treatment research and…

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…