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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

Community Call to Action - Save Medicaid

Call to Action:

  • Please contact your state Senator and state Representative in the General Assembly and ask them to return to Raleigh on November 17 for the extra session and fund a clean Medicaid rebase bill.
  • Cuts to Medicaid are already having very real and harmful impacts for children who need health care. Parents are already seeing doctors say they will not accept patients with Medicaid. Parents of children with disabilities are already seeing reduced services. In rural areas, health care facilities that serve primarily Medicaid patients may close altogether.
  • The Governor and the General Assembly have all agreed that North Carolina’s Medicaid program needs more money. The state can’t put health care costs on a credit card. The time is now for the General Assembly to put aside any unrelated matters and urgently pass a bill to fund the Medicaid program.

Background on Medicaid Extra Session – November 10, 2025

The General Assembly has left for the year without adequately funding Medicaid, and vulnerable North Carolinians don’t know if they’ll keep their access to the health care they need. Governor Josh Stein has called an extra legislative session on November 17 to fund Medicaid and give people the peace of mind they deserve. The legislature must come back to Raleigh and do its job so that the 3 million North Carolinians who rely on Medicaid can get the care they need to protect their health.

Medicaid serves more than 3 million North Carolinians. In several rural counties, more than half of the population has health coverage through NC Medicaid.

  • Medicaid provides life-saving care for children, including those with autism, pregnant and postpartum women, older adults, people with disabilities, and working North Carolinians.
  • For many vulnerable North Carolinians living with disabilities, Medicaid can be the difference between independence and institutionalization.
  • Patients are waiting for appointments. Parents are living in fear of losing their kids’ doctor.
  • Patients are waiting on pins and needles for the General Assembly to take action.  The legislature cannot keep them waiting any longer.

Medicaid Testimonials 

  • “My Direct Support Professionals are my ramp to the world and my community,” said Demi Eckhoff, a disability advocate. “A pay cut translates into potentially losing direct support professionals, which threatens my independence. If I don’t have my DSPs, I am at risk of going to the hospital, where I can’t work or study. Our disability community is fearful that these cuts will impact our basic needs and life.”
  • “Medicaid literally keeps our daughter alive and well, and it provides her the supports she needs to live her life as independently as possible,” said Betsy MacMichael, a disability advocate. “Without Medicaid, she would lose the independence she’s fought so hard for.” 

Governor Stein and NCDHHS have warned the legislature since May that the state’s Medicaid program didn’t have enough money.

  • NCDHHS leaders had warned the General Assembly for months that, without adequate funding, they would be forced to cut reimbursement rates to health care providers who give patients life-saving and life-enhancing care.
  • The legislature has had more than six months to take action.
  • NCDHHS even delayed the proposed cuts for the first three months of the fiscal year (July-September) to give the General Assembly time to make the Medicaid program whole. But that didn’t happen.

Instead of avoiding their responsibility to the people of North Carolina, the General Assembly needs to use this extra session to fund Medicaid.

  • Governor Stein has presented three options for reversing, avoiding, or delaying Medicaid cuts, but the General Assembly decided to use its October session to pass gerrymandered Congressional maps instead of funding health care.
  • Then, the legislature packed up and went home for the rest of the year – until Governor Stein called them back.

It’s time for legislators to come back to Raleigh and fully fund Medicaid so that every North Carolinian has access to affordable, good-quality health care.

Thank you to our generous sponsors:

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