Columns

I never knew what participating in medical research was all about when I was growing up. For 10 years, I was an active member of the Huntington’s disease community, but I had no clue about research. One reason was because from 1999 to 2009 there wasn’t much research to participate…

Moving is considered one of the most stressful events in people’s lives. After moving from the Midwest to the East Coast in the U.S. earlier this year, my wife, Jill, and I certainly agree with that statement. But she’d add something else to that list of stressful events: finding…

This past summer, I had to take my car to a mechanic. It had logged more than 122,000 miles and needed some major work done to it. My wife, Jill, went with me but she drove her car so I could leave mine at the mechanic’s shop, which…

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…

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…

Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…

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…

The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…

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…