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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

May 14, 2026

Educate, Educate, EDUCATE!

byErika Boulavsky, LCSW

If you have not seen us together, myself and Latorius Adams, Care Navigator from UNC HD Clinic, get along very well! In many ways, we find ourselves in a ying and a yang situation within the HD space. When she says we are jumping in the car to drive 2 hours somewhere, we are jumping in the car to present! We have recently had a few educational presentations set up: Central Regional Hospital in Butner, NC, 4 sessions with Durham EMT, multiple conferences, and more to come just within the month of May.

 

Central Regional was optional for those interested in learning more, and they filled an entire room with over 30 people wanting to learn more. Durham EMTs, we met EMTs with intention and empathy for the HD community. Even one of the individuals had experience in another state, frequently at an HD long-term care facility providing emergency care. We made connections within facilities and made friends wherever we went. These small moments are special, and we hope that lighting even the smallest spark continues to spread throughout North Carolina and beyond.

 

We aren’t stopping anytime soon, and if you find yourself wanting to join us on the educational journey, we have room in the car!

 

Thank you to our generous sponsors:

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