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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. 

  • Olivia * Living with JHD
    Olivia * Living with JHD

    My name is Olivia and I’m 17 years old with Juvenile Huntington’s Disease. I was diagnosed right before my 13th birthday a few years after my father. Living with this terrible disease has changed so much of my life. However, I still attend school and am a senior this year. I also participate in Girl Scouts. My favorite thing is PT where I get to ride Fritz a horse at hippotherapy. I also have a service dog Larry who helps me with walking, retrieving items and can go get my mom if I need help. Everyday I fight this disease.

  • 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

HDYO Camp Letter

The return of HDYO’s 5-day camp for North America was epic. Those from Canada and the United States ages 18-25 impacted by Huntington’s disease camped in cabins for 5 days in a small rural camp in Maryland (bunkbeds and bugs included). I had the privilege to volunteer as staff for the camp.

As volunteers and volunteer staff members greeted campers with smiles and signs, campers greeted us back with hesitant smiles. Some expressed excitement, some expressed worry and concern - a beautiful mixture of introverts and extroverts, but realistically we were all nervous about the next 5 days.

The day-to-day schedule consisted of campers split into 7 groups with a staff member and two volunteers. These groups met multiple times a day and focused on topics: coping with HD, grief and loss, talking to family/friends about HD, research, testing, all mixed with traditional fun camp activities (think paddle boarding, swimming, arts and crafts, basketball, rope swing, archery, etc.). There were buckets of tears shed, 1on1 counseling sessions, belly laughter, late nights, and early mornings; but we were there together. We watched as the camper tables at breakfast, lunch, and dinner morphed into larger groups and those sitting alone never sat alone again. I was fortunate to witness 35 young adults arrive as individuals impacted by HD leave as 35 family members who will remain connected forever. 35 campers might have greeted us with nervous expressions on day 1, but 35 campers left cheering, laughing, crying, and hugging their newfound family all the way to the airport.

Life is hard and HD makes things harder, but when we have each other, we will always be stronger together. HDYO camp is not just “some camp” but it is where lives are forever changed and saved.

Thank you HDYO for letting HD Reach partner with you for this experience. If you are hesitant to join a future camp, know the first step is the hardest. I guarantee it will be worth it.

Erika Boulavsky, LCSW

Community Outreach Specialist

Thank you to our generous sponsors:

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