For as long as I’ve known my wife, Jill, who’s gene-positive for Huntington’s disease, she’s had an uncanny ability to fix any problem thrown her way. It’s like watching a supercomputer in action, processing complex equations in milliseconds. I’ve come to realize that the way Huntington’s diminishes her…
Living with Huntington’s disease (HD) means navigating a wide range of symptoms that can impact my energy, coordination, and even my appetite. Some days, I wake up feeling strong and motivated, while other days, I need to give myself extra grace just to get through simple tasks. One way…
The U.S. Food and Drug Administration (FDA) has designated uniQure’s gene therapy candidate AMT-130 a breakthrough therapy for its potential to slow the progression of Huntington’s disease, according to the developer. This status is intended to speed the development and review of medications for serious or life-threatening illnesses…
The other day, I overheard something beautiful that made me pause and reflect. My wife, Jill, who is gene-positive for Huntington’s disease, was on the phone, comforting a friend struggling with caregiving responsibilities. “You’re doing an amazing job,” Jill told our friend. “Remember, even on the toughest days, your…
A recent weekend in North Carolina was nothing short of magical. I was invited by the nonprofit advocacy group HD Reach to be the keynote speaker for their annual Education Day. The theme this year — “HD Has Color” — couldn’t have been more perfect. It felt like an affirmation…
Most adults with the genetic defect associated with Huntington’s disease were completely able to perform daily activities and tasks at a first assessment, and maintained such skills over time, according to data from a natural history study of the neurodegenerative condition. That study assessed participants using the total functioning…
My wife, Jill, recently challenged a sentiment she hears far too often: that people with Huntington’s disease should feel “grateful” it’s a slow-moving condition, unlike amyotrophic lateral sclerosis (ALS). Her reaction struck a deep chord in me and revealed an important truth about how we view devastating rare and…
The sun filters through the trees, casting golden light onto the path ahead of me. The crisp morning air carries the scent of damp earth, and with each step, I feel more connected to the world around me. Nature has become more than just a backdrop to my life; it…
Researchers were able to promote the formation of new neurons that integrated into existing motor circuits and helped repair damage and influence motor behavior in the brain of a mouse model of Huntington’s disease, a study showed. “Our research shows that we can encourage the brain’s own cells to…
As my wife, Jill, and I sat at a sidewalk cafe, we basked in the warmth of the sun — a welcome feeling after what had felt like a lifetime of gloomy winter weather. Jill’s diagnosis of Huntington’s disease is an unwelcome companion in our lives, but it’s also…
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