A neighbor recently told my wife, Jill, and me that her eyesight is getting worse, so she can’t continue reading, which is her favorite pastime. Jill told her about a column I recently wrote about audiobooks, noting that they had helped Jill with her own reading difficulties and…
David McDonagh smiles in a photo. (Photos courtesy of David McDonagh) This is David McDonagh’s story: I don’t have “the gene,” but I’m still living with HD. Let me explain and I hope that you’ll see. I tested negative … and that’s just how I feel,…
Since her sister-in-law’s diagnosis, Kemi Olafare has been advocating for the Huntington’s disease community. (Photos courtesy of Kemi Olafare) This is Kemi Olafare’s story: On reflecting on Huntington’s disease (HD) and its impact on my world, I can categorize my journey into three stages. 1. Awareness is…
“And my mother … that was a little too much for her nerves, her something.” This comment, made in 1940, was the first time American singer-songwriter Woody Guthrie had publicly alluded to his mother’s Huntington’s disease. Guthrie was born on July 14, 1912, in Okemah, Oklahoma,…
Phil and Sarah Morris live in Perth, Western Australia. (Photos courtesy of Sarah Morris) This is Sarah Morris’ story: Once you know, it just takes over. For years it was the first and last thing on my mind every day. It was always in my head, always a worry.
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…
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