Columns

Over the past year, Huntington’s disease has begun to affect my gene-positive wife, Jill, in various ways. Anyone who’s met Jill would tell you that she loves knowledge. As a lifelong journalist, I share the same passion. However, I don’t want my knowledge about Huntington’s disease to…

The risk of potentially having Huntington’s disease (HD) if you have an inherited gene mutation has often been described as a coin toss — you either have the mutant gene that causes HD or you don’t. Your kids will either be at risk or they won’t. It’s easy…

The European Medicines Agency (EMA) has granted orphan drug status to SAGE-718 as a potential therapy for Huntington’s disease. The experimental therapy is being developed by Sage Therapeutics for treating cognitive impairment associated with Huntington’s and other neurological disorders. Orphan drug status is given to treatments with the potential to improve…

On a recent afternoon while I was at work, my wife, Jill, sent me an alarming text. “I’ve had a little issue with a knife and my thumb,” she wrote. “If it hasn’t stopped bleeding by the time you get home tonight, I may need to get stitches.” I…

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…