The weather where I live in Maryland has been cold, gray, and rainy lately. A steady diet of warm, sunny weather remains a distant memory. The full glory of spring is on hold, as many trees and flowers have restrained themselves from blossoming into a full palette of colors. Days…
Columns
When I stepped away from my role as board chair of the Huntington’s Disease Youth Organization in 2020, I knew it wouldn’t be long before I found my next Huntington’s passion project. The passion in me is deeply rooted and originally created through my mom, who passed from Huntington’s…
I recently shared with my wife, Jill, a saying I read in a store: “A smile and some kind words can really change someone’s day.” Jill smiled and said she knew the power of that saying because she had witnessed it years ago. The story she told me unfolded during…
My wife, Jill, works from home doing freelance jobs. Because she works remotely, she can watch television during the day from the comfort of our living room. The recent confirmation hearings in the U.S. Senate for Supreme Court nominee Judge Ketanji Brown Jackson kept Jill transfixed as she pondered…
Last week, I was listening to GC Chat, a genetic counseling podcast, and it got me thinking about the Huntington’s disease (HD) genetic testing process. In Season 3, Episode 3, “A Heavy Burden,” hosts and genetic counselors Ashley Crook and Ellenore Martin discuss a case in which a…
The perception of time is impaired in people with symptomatic Huntington’s disease in its early stages — but not in patients without symptoms, a study revealed. These findings suggest that time perception impairment may be used as a clinical tool for assessing those with the neurodegenerative disorder, the scientists…
What happens when you mix the following events together: the war in Ukraine, climate change, rising gas prices, supply chain issues, and a pandemic? It’s a recipe for a rising tide of anxiety. Scroll through social media or peruse any of the major news outlets, and the steady drumbeat…
As everyone who reads this column knows, Huntington’s disease (HD) is a devastating illness for those who test positive on a genetic test. But it can be equally terrible for family members who test negative. I’m referring to survivor’s guilt, which happens when someone feels guilty for surviving a…
Recently, my mother-in-law invited her daughter, Jill, to be part of a Zoom call with a Huntington’s disease (HD) support group she belongs to. One of the guest speakers was Patty Conlon, a clinical research coordinator at the University of Pittsburgh Medical Center’s (UPMC) Department of Neurology. Conlon…
Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…
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- Watching Huntington’s switch roles in our marriage was jarring
- The gift of community is what I’m most thankful for this year