When you live with Huntington’s disease, your world begins to shift in ways you never imagined. Things that once felt routine, such as tying your shoes, remembering appointments, or going for a walk, can suddenly feel like climbing a mountain. For many of us in the Huntington’s community, these…
Introducing small interruptions into the abnormally long CAG repeat expansion that causes Huntington’s disease can stabilize or even reduce the length of that DNA stretch, which would be expected to slow disease progression. These are the findings of a study that tested base editing, a technique that changes a…
If you ever met my wife, Jill, you’d know she has a handful of guidelines that she lives by — quirky, heartfelt philosophies that influence her approach to life. One of my favorites is her unofficial family motto: “Live like you’re a tourist.” It’s a phrase she uses to explain an idea…
One of the most common questions I hear as someone living with Huntington’s disease (HD) is, “Where do you get your medical care?” I always smile and say, “At the Huntington’s Disease Society of America Center of Excellence at the Cleveland Clinic,” because I’m genuinely grateful to be under…
uniQure plans to submit a biologics license application (BLA) to the U.S. Food and Drug Administration (FDA) early next year seeking approval of its gene therapy candidate AMT-130 for Huntington’s disease. Top-line, three-year data from the ongoing clinical trials that will support that application are due in the…
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;…
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