Helping Families with Huntington's Disease
HD Reach is working to improve the care and quality of life for those affected by Huntington’s disease. Founded as a nonprofit in 2009, we provide connections to medical providers, referrals to local services, care management, family support, education, and anonymous genetic testing.
We’re here for you. Call or Email: 919.803.8128 or info@hdreach.org
If you’d like us to know how to help you better, let's be friends. HD Reach is a private nonprofit organization. All information collected is held in strict confidence. All HD Reach services are provided through community based funding, donations, or private pay.
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Check our calendar for upcoming events: Both in-person and virtual. You can register here!
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Check out our store for all kinds of HD gear. It's one of the easiest ways to become an advocate!
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Jeremy * At Risk for HDMy name is Jeremy, and Huntington’s disease has deeply impacted my family. My father, James, passed away on October 3, 2025. He was a devoted father, husband, and grandfather who always tried his hardest to be present, even as HD affected his movement and mind. My mother, Donna, is the hero of our family. She cared for my dad, managed everything at home, and supported me through my own HD testing.
I am forever grateful for both of my parents. Thank you, Mom, for everything.
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People served through our family system model of care.
15,000
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People affected by HD in the US including 1,000 in NC.
41,000
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Americans at-risk for HD, including 5,500 in NC.
200,000
Latest HD News & Research Updates
Latest Huntington's Disease News
Huntington’s Disease News, a Bionews site, provides clear, reliable news, research updates, and real-world perspectives to help people living with Huntington’s disease and their caregivers feel more informed, confident, and supported throughout their care journey. Information is not meant to replace or provide medical advice.
Editor’s note: This story includes discussion of suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention helpline at findahelpline.com. While Huntington’s Disease Awareness Month brings greater awareness, this […]
The post In raising HD awareness, we must be mindful of the stories we tell appeared first on Huntington's Disease News.
May marks Huntington’s Disease Awareness Month, and organizations worldwide are promoting greater awareness and understanding of the condition, as well as support for patients, families, and caregivers affected by it. Huntington’s disease (HD) is a genetic disorder that causes progressive damage and death to nerve cells in the brain. Huntington’s symptoms include movement disorders, cognitive […]
The post Huntington’s awareness month shines light on personal stories appeared first on Huntington's Disease News.
Mothers are often told that, once they have a child, their heart now lives outside their body. For years, that line sounded like something stitched on a pillow you buy at a Hallmark store and then feel guilty about never dusting. For my wife, Jill, it stopped being a cliche and became a fact of […]
The post Living in the present, even when Huntington’s reminds us of the future appeared first on Huntington's Disease News.
One of the hardest things Huntington’s disease has taught me is how to accept help without attaching shame to it. I live independently, and I am proud of that. My independence matters deeply to me. It’s not just about paying bills, keeping appointments, or managing my home. It’s about dignity. It’s about knowing that I […]
The post I’m learning to accept help without feeling like a burden appeared first on Huntington's Disease News.
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