Columns

My objectives in this column are to acknowledge two upcoming holidays: Valentine’s Day, which my wife, Jill, doesn’t believe in (she thinks it’s manufactured and that love should be celebrated every day), and Rare Disease Day, on Feb. 28, which raises awareness and prompts change for…

Because my wife, Jill, has Huntington’s disease (HD), my roles include being her caregiver. With National Caregivers Day coming up on Feb. 17, I thought it would be fitting to share some advice from fellow caregiver and author Lea Zikmund, who published a book last year…

Spark Therapeutics and Neurochase have joined forces to develop Neurochase’s proprietary delivery technology for gene therapies that target neurodegenerative diseases, such as Huntington’s disease. The technology, called Convection Enhanced Delivery (CED), allows for a controlled delivery of gene and other therapies directly into specific brain regions with the…

Huntington’s disease (HD) is hereditary. Because the father of my wife, Jill, was gene-positive for HD, she knew she had a 50% chance of getting the disease. Years ago, Jill told me to be honest with her. “If you think I’m showing symptoms, I want you to…

The new year is in full swing, and I’m excited for what 2023 has in store for the Huntington’s disease (HD) community. Looking back, it feels like the past three years haven’t gone in the right direction. We still lack disease-modifying therapies, legislative support for the HD…

In Huntington’s disease, neurodegeneration in a brain region called the striatum differs not only across different types of neurons, but also across distinct striatal compartments, according to a study of brain samples from a Huntington’s patient and mouse models. The striosomes, the striatal compartment involved in regulating mood, was more…

In 2018, my wife, Jill, started showing classic signs of Huntington’s disease (HD) — including involuntary movements, called chorea — so she decided to go through with genetic testing. After she was declared gene-positive for HD, she shared the devastating news with our daughter, Alexus. The conversation…

I’m a journalist, so my mind always wants to figure out the “why” of things. That means I ask questions about everything. Sometimes I get answers I don’t want to hear. Here’s a recent example. My wife, Jill, and our daughter, Alexus, both of whom are gene-positive for…

Neuron-targeted treatment based on zinc-finger DNA-binding proteins — called ZFPs — was found to lower brain levels of mutant huntingtin (mHTT) protein in a Huntington’s disease mouse model. The zinc-finger proteins rescued behavioral deficits and extended survival in these mice, the study demonstrated. ZFPs are among the most abundant…

For months, people from across the U.S. have been working hard with members of the Huntington’s Disease Society of America’s (HDSA) advocacy caucus to convince members of Congress to pass the Huntington’s Disease Parity Act. My wife, Jill, who is gene-positive…