Social worker Jessica Marsolek is the associate director of community services for the Huntington’s Disease Society of America (HDSA). My wife, Jill, who is gene-positive for Huntington’s disease (HD), and I met Jessica several years ago at an HDSA-sponsored online support group and were impressed by her…
Larry Boyd is an advocate for people with Huntington’s disease. (Courtesy of Larry Boyd) This is Larry Boyd’s story: It all began in the mid-1960s when I entered high school. My mother was taken to a University of Colorado hospital for what was initially diagnosed as a nervous breakdown,…
Mornings with Huntington’s disease can feel unpredictable. Some days I wake up with energy and clarity. Other days, fatigue or chorea greets me before I even reach for the light switch. There was a time when these inconsistencies left me feeling defeated before the day began. But over time,…
Erik Barrett runs his first marathon on the highways of Manitoba, Canada, in 2020. (Photos courtesy of Erik Barrett) This is Erik Barrett’s story: I wear many hats, whether it’s being a caring family member, a cheerleader to my friends, or an ultramarathon-running Huntington’s disease advocate. It’s easy…
From left, Erika and Melissa Boulavsky celebrate on their wedding day. (Photos courtesy of Melissa Boulavsky) This is Melissa and Erika Boulavsky’s story: Both of our stories begin with and continue to be shaped by the Huntington’s disease (HD) community. We both come from families affected by Huntington’s;…
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…
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