Stu Hopper, left, and Carlos Contreas take a photo in Tenerife, one of the Canary Islands, on a cruise stop by the Royal Caribbean’s Explorer of the Seas. (Photos courtesy of Stu Hopper) This is Stu Hopper’s story: Carlos Contreas and I, Stu Hopper, met…
My wife, Jill, is generally an optimist. But lately, I’ve seen frustration cloud her eyes. It’s not just the daily battles we fight together against Huntington’s disease (HD). Those are struggles we’ve learned to face, one day at a time. This frustration is tied to something bigger: the Huntington’s…
Living with Huntington’s disease has taught me that self-care is not a luxury, but a commitment, an act of self-preservation, and a form of self-respect. Before my diagnosis, I had a very different idea of what self-care meant. I thought it was about escaping life’s stressors with…
Kerry Agee smiles with her husband, Cody Agee. (Photos courtesy of Kerry Agee) This is Kerry Agee’s story: Hello! It’s a pleasure to meet you. I’m Kerry, 44, wife of a Gen-Xer, mother to a teen, and lover of dance, travel, “Lord of the Rings,” and Hello Kitty, as…
The emphasis of this year’s Huntington’s Disease Awareness Month, celebrated each May, is on the patient journey. Also, International Huntington’s Disease Awareness Day is May 15. Huntington’s disease, sometimes known as HD, is a progressive neurodegenerative condition believed to impact 4.9 per 100,000 people globally, including some…
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…
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