When she was little, my daughter, Alexus, visited a 7-Eleven store with my wife, Jill. To reward Alexus’s wonderful report card, Jill said she could choose any treat. Our daughter said she wanted one of those scratch-off lottery tickets. Jill patiently tried to explain that no one ever really…
Huntington’s disease affects an average of 1 in 10,000 people worldwide. But in small, remote pockets of South America, its prevalence skyrockets to nearly 1 in 10. Reasons identified for this include geographic isolation, marriage between cousins, high reproduction rates, and a lack of education.
First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most people. Now, the good news: You already know how to face loneliness and adversity — qualities that make you far stronger…
Thursday, Oct. 17, 2019, started off like most weekdays for me. Working in consulting, there are always ebbs and flows. Some days I’m extremely busy, other times I’m not. That day was one of the latter. I was having lunch with a co-worker when he…
I can’t stand dogs. They bark a lot. They smell. They require a lot of attention. They tend to whine when I’m on the phone. So, yeah, I can’t stand them. Relax, people! I’m just kidding! I wanted to get your attention for a couple of minutes so you could…
Treatment in a U.S.-based Phase 1/2 clinical trial evaluating uniQure‘s gene therapy AMT-130 in people with Huntington’s disease has been temporarily postponed in response to the COVID-19 outbreak, the company announced. The decision to postpone procedures in the two enrolled…
The uncontrolled jerking and writhing movements associated with Huntington’s disease are well known, along with cognitive decline. But doctors who treat Huntington’s patients are far less familiar with the pain and depression their patients endure almost constantly. That’s the consensus of a panel of experts who spoke at…
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. The event’s sponsor, the National Organization for Rare Disorders (NORD),…
I wasn’t expecting to be brought to tears when I heard motivational speaker Lisa Nichols address a crowd at the Archangel Summit in Toronto last year. Nichols strode onto the catwalk-style stage wearing a long, embroidered dress, her braided hair cascading down her back. A…
This week marks a year since I started writing my column, “A Family Tradition.” Having a forum like this has provided an amazing opportunity to share about the journey my wife, Jill, and I have embarked on since her Huntington’s disease diagnosis in 2018. Honestly, I wish neither she…
Get regular updates to your inbox.
