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Throughout May, Huntington’s Disease News is recognizing Huntington’s Disease Awareness Month with a variety of stories that represent different perspectives on life with Huntington’s that we hope help to inspire and empower our readers. These stories highlight some of the unique challenges of living with Huntington’s, as well as stories of hope, inspiration, and other topics that help to generate awareness among the Huntington’s disease community. Follow along with the series here or visit us on Facebook or Instagram using the hashtag #HDSpotlight

May 31, 2024 by Bionews Staff

Huntington’s disease took so much from my family

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…

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May 28, 2024 by Bionews Staff

My family’s story with Huntington’s disease, and a new beginning

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…

May 26, 2024 by Bionews Staff

A Huntington’s disease love story and a life together

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…

May 22, 2024 by Bionews Staff

Shedding light on injustices while battling Huntington’s disease

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…

May 20, 2024 by Bionews Staff

I don’t have the gene but I’m still living with Huntington’s: A poem

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…

May 18, 2024 by Bionews Staff

My journey to joining the Huntington’s disease community

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…

May 15, 2024 by Bionews Staff

How we’re learning to leave Huntington’s behind

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…

May 12, 2024 by Bionews Staff

Mom with Huntington’s in family: ‘We’re all more than a faulty gene’

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…

May 8, 2024 by Bionews Staff

I’m grateful, despite my wife’s diagnosis of Huntington’s disease

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…

May 4, 2024 by Bionews Staff

Living with Huntington’s disease is a roller coaster life

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…

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Recent Posts

  • An ‘aha!’ moment about a father’s neurological symptoms
  • Finding joy and purpose while living with Huntington’s
  • Empowering others with Huntington’s through storytelling
  • PTC518 found to reduce huntingtin protein levels in 1 year in trial
  • Travel and Huntington’s disease are parts of our marriage
  • With the HD Parity Act stalled, is it time to shift gears?
  • Personalizing my self-care routine in life with Huntington’s disease
  • My family helps me manage the symptoms of Huntington’s
  • Focusing on the journey for Huntington’s Awareness Month
  • To manage cognitive issues, my wife works to keep her brain busy


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