uniQure expects to begin planned discussions with the U.S. Food and Drug Administration (FDA) in the coming months to outline the future steps for testing its gene therapy candidate AMT-130 for early Huntington’s disease, and seeking regulatory approval of the treatment. In its interactions with the FDA, expected to…
Watching my wife, Jill, give advice to people touched by Huntington’s disease (HD) during a recent online support group meeting reminded me of the importance of sharing wisdom. Knowing she’s gene-positive for the rare, terminal illness she inherited from her late father has given her the opportunity…
Charlie Burke holds her son Cian. (Photos courtesy of Charlie Burke) This is Charlie Burke’s story: In 2019, I gave birth to my first child and found out I was at risk of Huntington’s disease (HD). My son was only 3 months old when my dad told me…
As an advocate and columnist for Huntington’s Disease News, I was excited to be chosen as a moderator for this site’s Community Spotlight. The initiative will highlight personal stories and raise awareness throughout May in honor of Huntington’s Disease Awareness Month. My role involved finding other people…
Martin and Sara Gardea pose for a photo on their wedding day. (Photos courtesy of Martin Gardea) This is Martin Gardea’s story: I met my wife Sara in San Francisco. We’re both artists and are the creative type. Our first date in 2012 was to the San Francisco Museum…
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…
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