In a world full of negativity, positive reinforcement is a welcome practice. I’m lucky to be part of a family where it is encouraged and implemented. The process has shaped me into a better husband and caregiver to my wife, Jill, who is gene-positive for Huntington’s disease. Jill…
From left, Roman, Todd, Brandy, and Meara Niemiller pose for a photo. (Photos courtesy of Brandy Niemiller) This is Brandy Niemiller’s story: On Valentine’s Day in 2001, I was an 18-year-old high school graduate who was unsure about where I was headed in life. That day, my long-time friend…
“Can they tell by looking at me how useless and weak and flimsy and [artificial] (and how foney) I feel?” — notes from Woody Guthrie, dated Aug. 21, 1952 Woody Guthrie was an American singer-songwriter and visual artist who was born in 1912 in Oklahoma. Though he inherited…
Tanita Allen advocates for those harmed by neurological diseases, systemic injustice, and healthcare disparities. (Photos courtesy of Tanita Allen) This is Tanita Allen’s story: Life has taken me on a journey filled with unexpected twists, especially as I face the challenges of Huntington’s disease (HD). Sharing my story…
Scientists at the Broad Institute of MIT and Harvard have engineered a harmless adeno-associated virus (AAV) that can efficiently reach the brain, potentially improving the efficacy of brain-targeted gene therapies for neurological conditions such as Huntington’s disease. Current AAVs that deliver gene therapies to cells in the body via…
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.
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