My wife, Jill, has a brilliant way of making complex things simple. She’s what I call an “explainer extraordinaire.” She has a gift for taking in information, processing it, and then breaking it down in a way that’s easy for anyone to understand. Her gift stems from the…
People with Huntington’s disease have greater variations in disease symptoms and physical function between days than within each day, according to a study based on patient reports and objective data collected with a wrist-worn device in the U.S. The findings suggest “it may be sufficient and reliable to evaluate…
Life with Huntington’s disease is filled with challenges — some visible, some hidden. While the physical and emotional toll often takes center stage, there’s another weight that many in our community carry quietly: the financial burden. From navigating complex insurance policies to managing rising out-of-pocket expenses, the cost of…
Hannah Remillard, right, with her mom, Terresca “Mama T” Remillard. Hannah became her mother’s caregiver at the age of 14. (Photos courtesy of Hannah Remillard) This is Hannah Remillard’s story: A typical 14 year old would just be starting to find their own identity and individuality. But for me,…
Emma Wajswasser, center, displays her book alongside her parents, Erin Paterson and Daniel Wajswasser. (Courtesy of Erin Paterson) This is Emma Wajswasser’s story: Ever since I was young, I was aware that my grandpa had Huntington’s disease. My parents always took opportunities to teach me about his…
Two signaling enzymes, GSK3-beta and ERK1, play opposing roles in the development of Huntington’s disease and may represent new therapeutic targets, a study showed. “We propose that ERK1 may protect neurons in the face of Huntington’s disease, while [GSK3-beta] may exacerbate Huntington’s disease,” Shermali Gunawardena, PhD, the study’s senior…
My wife, Jill, recently had an “aha!” moment about some of the neurological symptoms her late father experienced during his battle with Huntington’s disease. While folding some laundry, she picked up a large sheet that had been sitting in a chilly part of our home. The…
Some days, living with Huntington’s disease feels like trying to catch a butterfly in a storm. The winds of chorea, fatigue, mood swings, and forgetfulness push against the delicate wings of joy. Yet through it all, I’ve learned to reach for joy anyway. To find purpose in the present…
Erin Paterson holds copies of her books. (Photo courtesy of Erin Paterson) This is Erin Paterson’s story: I attended a conference for families impacted by Huntington’s disease (HD) — a spectacular event with expert panels and motivational speeches. But it’s the hugs and the feeling of being loved…
One year of treatment with PTC518 safely lowered blood levels of huntingtin, the protein that’s faulty in Huntington’s disease, in a dose-dependent manner in people with early- and late-intermediate stages of the neurodegenerative condition. That’s according to new data from the Phase 2 PIVOT-HD clinical trial (NCT05358717), which…
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