Ayana Bio was awarded $300,000 from the National Institutes of Health (NIH) to sample saffron — the world’s most expensive spice — grown in a lab and identify which of its compounds offer the strongest neuroprotective effects for Huntington’s disease. The Boston-based company will use the grant,…
Huntington’s disease, a neurodegenerative condition, can cause symptoms that are often unpredictable and debilitating. My wife, Jill, who is gene-positive for Huntington’s, has provided me with valuable insight into what she feels by coming up with some impressive descriptions of it. Jill shared a poignant description…
Lauren holds a Huntington’s Disease Association banner at the Big Half London, a half-marathon. (Photos courtesy of Lauren) This is Lauren’s story: Inexplicably, Dad kept us away from Nan, who spent years in a care home. Eventually, Dad tested positive for Huntington’s disease (HD). After meeting my future…
Imagine what a world without Huntington’s disease (HD) would look like if a cure were found. It would be a world free from the suffering caused by symptoms like chorea and cognitive, emotional, and behavioral changes. There would be no more swallowing difficulties, weight loss, or pneumonia…
The U.S. Food and Drug Administration (FDA) has approved Neurocrine Biosciences’ oral granules formulation of Ingrezza (valbenazine) — called Ingrezza Sprinkle — for treating chorea, or involuntary movements, in adults with Huntington’s disease. The new formulation, taken once per day, is designed to provide an easier administration option…
Jennifer Ushe’s grandparents, Jean and Edward Moshier. (Photo courtesy of Jennifer Ushe) This is Jennifer Ushe’s family story: Both of my grandparents died 10 years before I was born: Grandpa, unexpectedly and tragically, of a heart attack, and Grandma, expectedly but no less tragically, of Huntington’s disease. My…
May is Huntington’s Disease Awareness Month, and this year the focus is on the patient experience. Huntington’s disease (HD) is a neurodegenerative disorder thought to affect 4.9 per 100,000 people worldwide, including about 41,000 U.S. residents, and can impact many aspects of everyday life. While each patient’s journey…
As my wife, Jill, and I recently made our way through Ronald Reagan Washington National Airport in Arlington, Virginia, I saw her glance longingly at a Starbucks we passed on the way to our gate. We were headed to Boston to visit family but were running a little…
Some of my closest friends are musicians who love the work of Bob Dylan. During a recent conversation, Dylan’s visit with ailing singer-songwriter Woody Guthrie came up. My friends hadn’t realized that Guthrie had Huntington’s disease — which they knew as the same…
Daily treatment with Ingrezza (valbenazine) led to sustained reductions in chorea — characterized by involuntary, unpredictable body movements — for nine months among the small group of Huntington’s disease patients simultaneously using antipsychotic medications in the Phase 3 KINECT-HD2 trial. In addition, improvements in chorea were also…
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