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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. 

  • Check our calendar for upcoming events: Both in-person and virtual. You can register here!

  • Register for upcoming webinars, or view past recorded webinars. Check out our library!

  • Check out our store for all kinds of HD gear. It's one of the easiest ways to become an advocate!

  • Jeremy * At Risk for HD
    Jeremy * At Risk for HD

    My 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.

Background Mountain
  • People served through our family system model of care.

    15,000

  • People affected by HD in the US including 1,000 in NC.

    41,000

  • Americans at-risk for HD, including 5,500 in NC.

    200,000

January 31, 2023

Anonymous genetic testing and decision-making preparation made more accessible through generous donations.  

Having the time to work with a counselor who is an expert in Huntington’s Disease before taking the genetic test makes all the difference in coping with the results. HD Reach’s Decision Path is the first step in the anonymous genetic testing program that is designed to build decision making skills and develop resilience. A small fund was established to provide  $300 discounts towards the $750 Decision Path fee to increase accessibility. The anonymous genetic testing fee will remain $450.  

“Accessibility was a priority when we designed the program for people at-risk for HD. We’re using teletherapy for the first time to make the counseling sessions convenient and the fee is just enough to cover our expenses. We’re grateful to donors to create a few scholarships for the next few participants. It’s never easy, but hopefully this will make it easier,” said Debbi Fox-Davis, Executive Director.

The $300 discount will be applied to the next five people who participate in the Decision Path, the prerequisite for the Anonymous Genetic Testing Path. More details are on the website at: https://www.hdreach.org/genetic-testing/anonymous-genetic-testing-path.html and everyone is encouraged to contact us.

Thank you to our generous sponsors:

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