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  • About Huntington's
    What is Huntington’s disease?
    • Juvenile Huntington’s disease
    Diagnosis
    Living with Huntington’s disease
    Symptoms
    Causes
    Stages
    Treatments
    • Approved treatments
    • Experimental treatments
    • Non-drug treatments
  • Navigating Huntington’s disease
    Videos: Bracing for the long haul
    Anticipatory grief
    Talking to children about Huntington’s
    Huntington’s support groups
    Huntington’s early diagnosis
    Huntington’s progression
    Adaptive devices for Huntington’s
    Huntington’s genetic testing
    Chorea and Huntington’s
    Huntington’s and diet
    Doctor discussion guide
    Huntington’s and sleep
  • News
  • Columns
    A Family Tradition — Carlos Briceño
    HD in Color – Tanita Allen
    Archived columns
    • Negative to Positives — B.J. Viau
    • A Genetic Lottery – Rebecca Field
    • Always Looking Forward — Alexus Jones
    • Gene Positive — Steven Beatty
    • From Where I Stand — Erin Paterson
  • Advocacy partners
  • What can we help you find today?

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 part of my life from an early age. My earliest memory was sitting against the wall…

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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 easy to watch your family deteriorate and your children become caregivers. My grammy (my dad’s mom)…

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 graduate who was unsure about where I was headed in life. That day, my long-time friend…

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 unexpected twists, especially as I face the challenges of Huntington’s disease (HD). Sharing my story…

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 I hope that you’ll see. I tested negative … and that’s just how I feel,…

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 impact on my world, I can categorize my journey into three stages. 1. Awareness is…

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 last thing on my mind every day. It was always in my head, always a worry.

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 Huntington’s disease (HD). My son was only 3 months old when my dad told me…

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 and are the creative type. Our first date in 2012 was to the San Francisco Museum…

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 a care home. Eventually, Dad tested positive for Huntington’s disease (HD). After meeting my future…

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Recent Posts

  • $12M grant will back first trial of stem cell therapy for Huntington’s
  • A tribute to the kindness of strangers in life with Huntington’s
  • How to support someone who is planning for future care
  • Antipsychotics improve functional capacity, independence in HD
  • Despite dwindling resources, hope endures among researchers
  • The ‘invisible’ symptoms of Huntington’s that people don’t see
  • Genetic variant delays Huntington’s onset by up to 23 years: Study
  • Watching Huntington’s switch roles in our marriage was jarring
  • The gift of community is what I’m most thankful for this year
  • Revir wins $4.6M grant to advance oral Huntington’s treatment


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This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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