Austedo XR, a new extended-release formulation of Austedo (deutetrabenazine) has been approved by the U.S. Food and Drug Administration (FDA) to treat adults with chorea — involuntary muscle contractions — associated with Huntington’s disease. Austedo XR contains the same active agent as the original therapy, but is taken just once a day, with…
As a lifelong advocate in the Huntington’s disease (HD) community, fellow Huntington’s Disease News columnist B.J. Viau, whose late mother had HD, knows that genetic testing is a life-changing, emotional, and difficult experience for those who are at risk for this rare…
The Huntington’s Disease Society of America (HDSA) is awarding 56 grants totaling more than $2 million to expand its Centers of Excellence network, which is dedicated to providing comprehensive care to people with Huntington’s disease. Dartmouth–Hitchcock Medical Center in New Hampshire joins last year’s total of 55 grant-funded Centers of Excellence. The…
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…
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