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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. 

  • Sonya * Living With HD
    Sonya * Living With HD

    My name is Sonya Bailey, I am 54 years old and was diagnosed at 49 with Huntington's disease. I first learned about Huntington's when my father was diagnosed with it during the 90s. Huntington's at first was a difficult pill to swallow, but now I am grateful because it's allowed me to be closer to my grandkids and to be part of the awesome community at HDREACH – the sense of community, resources, and friendship they give our family makes me not feel alone in my journey. I always look forward to our monthly gatherings to hang out with everyone.

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

    15,000

  • People affected by HD in the US including 1,400 in NC.

    41,000

  • Americans at-risk for HD, including 8,000 in NC.

    200,000

A First Step, One Craft at a Time

My mom is one of my all-time favorite people. She also has Huntington’s disease, and as passionate as she is, some things feel more overwhelming than they used to be for her. She enjoyed creating art but has not done anything like that in years. Since I’ve been working for HD Reach, she has come to Education days and golf days to volunteer, and loves putting together an amazing raffle basket. When it comes to getting support herself, she would rather help others. Starting Crafting Corner was a hopeful way to engage those who enjoy crafts, but also to help those feel like this may be a space they can be themselves. Practice your handwriting by writing lists, color in a penguin, paint the plant pot, do the diamond art you have been putting off for a year; all over shared experiences with Huntington’s disease. It has become this safe sanctuary where people can express their frustrations, their sadness, and also their joys and the roses in their lives. This program is the first program my mom texted, “Can I join Crafting Corner?” This is the first time in a long time she has wanted to try something new by attempting pearl art, but also having her markers nearby to color if Pearl art isn’t her thing. She has joined our Heylo group and is excited for that first session to meet others over crafts. This is what it is all about! I hope you also find a program of ours that feels comfortable enough to take that step to join. We are here to create these spaces with the hope of reducing isolation and helping others take their first steps into receiving support, even if it is over a craft. 

Thank you to our generous sponsors:

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