Porcia White and her husband, Jamie, found out together the results of her genetic testing for Huntington’s disease. (Photos courtesy of Porcia White) This is Porcia White’s story: Huntington’s disease was a part of my life from an early age. My earliest memory was sitting against the wall…
Chrissi and Tommy Penney have been together since 2010. (Photos courtesy of Chrissi Penney) This is Chrissi Penney’s story: I’d like to share my family’s story with Huntington’s disease (HD). It’s not easy to watch your family deteriorate and your children become caregivers. My grammy (my dad’s mom)…
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…
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…
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…
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.
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…
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…
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…
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