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…
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…
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