As a Huntington’s disease (HD) community advocate, I am always trying to listen and learn from anyone who may help the cause. This means listening to people outside the HD community, as well as those who are part of it. Earlier this year, I was connected to a young…
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It’s not enough. That’s what I kept thinking when my wife, Jill, and I were watching the 7th Annual Freeze HD virtual event on Oct. 16. This entertaining and emotional benefit featured a silent auction, music performances, and celebrities who shared how Huntington’s disease (HD) has affected family members…
My wife, Jill, who is gene-positive with Huntington’s disease (HD), is a born caregiver. It’s one of the reasons I fell in love with her. I watched her take care of her father, who also was diagnosed with HD, as he started to decline physically and mentally. It was an…
I’ve worn many hats as a Huntington’s disease (HD) community advocate over the past 25 years, after my mom was diagnosed in the early 1990s. I’ve been a caregiver to my mom, a person at risk, a grassroots fundraiser, a public speaker, a pharmaceutical sales rep for an…
NeuExcell Therapeutics has entered into a research deal with Spark Therapeutics to advance the development of a safe and effective neuroregenerative gene therapy for Huntington’s disease. Under the terms of the agreement, Spark, a member of the Roche Group, will have access to NeuExcell’s gene therapy platform…
On Saturday evening, my wife, Jill, and I will be putting on our fancy party clothes to attend the 7th Annual Freeze HD virtual event. The benefit will feature celebrities, music performances, and a silent auction, with the goal of raising money for the Huntington’s Disease Society of America.
My wife, Jill, and I recently took a road trip. One of the reasons we’d wanted to move to the East Coast of the United States from the Midwest was to live closer to family. So, we were happy to drive to see Jill’s relatives, including her two brothers,…
A Phase 1/2 trial evaluating Wave Life Science’s investigational therapy WVE-003 for Huntington’s disease has started dosing patients, the company has announced. The SELECT-HD trial (NCT05032196), underway in clinical sites in Australia, Germany, Poland, and the U.K., is currently looking to enroll 36 Huntington’s patients, ages…
I learned a new recipe for the overwhelming chaos known as moving. Take a dash of living out of several suitcases. Now, add that to living in someone else’s home. Top it off with an old dog and slippery wooden floors with stairs. Serve it with a glass of feeling…
Where do you go to find support and information about Huntington’s disease (HD) when you need it most? This question will certainly receive a plethora of answers. Having been part of the Huntington’s community for 25 years, I’ve utilized many different options based on my needs. In today’s world of…
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