Researchers have developed a modified and harmless adeno-associated virus (AAV), called AAV-DB-3, that can efficiently deliver low doses of gene therapies to deep regions of the brain impacted by neurodegenerative diseases such as Huntington’s disease. AAV-DB-3 was more than 200 times more potent at delivering its genetic cargo to…
“Isn’t it ironic, don’t you think?” my wife, Jill, asked, quoting Alanis Morissette, her favorite singer. “Everywhere you look, people are talking about medications like Ozempic and Wegovy to help with weight loss, while the Huntington’s disease community is desperately trying to keep weight on our loved ones.” Jill and…
When I first heard the words “Huntington’s disease,” it felt like the ground beneath me gave way. There was no clear path forward, no instruction manual explaining how to navigate a life that had suddenly been redefined. At the time, I didn’t have the language to express the tidal…
From left, family members Fernando Torres, Ana María Torres, and Rafael Torres take a Sunday stroll. (Photos courtesy of Ana María Torres) This is Ana María Torres’ story: My first memories of Huntington’s disease come from my uncle Mau, my dad’s brother. He was often irritable, spoke…
Christy Dearien discovered her father and grandfather had Huntington’s disease after her brother was finally diagnosed. (Photos courtesy of Christy Dearien) This is Christy Dearien’s story: I knew nothing about Huntington’s disease when my brother was diagnosed with it in 2014. But his diagnosis explained everything about my…
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…
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