HD Reach is a nonprofit organization dedicated to providing access to healthcare, education, and social assistance for patients and families affected by Huntington’s disease in North Carolina.
We envision a future in which ALL people affected by Huntington’s disease in North Carolina are able to access the help they need to cope with Huntington’s disease.
HD Reach has several values that guide our work:
- Dedication to our cause
- Sustainability for the future
- Innovation in the programs we design
- Excellence in care
- Empathy for all people affected by Huntington’s disease
Huntington’s Disease (HD) is a progressive genetic disorder of the brain. HD causes great suffering not only in those it strikes, but also in their families. Despite promising research and unprecedented financial support for drug development, medical care for HD patients and their families across North Carolina has been poor, inaccessible, and inadequately coordinated. In our world today, HD sufferers and their families in North Carolina without access to expert HD clinicians receive little more than sympathy. After generations of misunderstanding and inadequate care, it is no wonder many families fear a loved one being identified with HD. In such circumstances, families often believe that there is nothing anyone can do to help.
Fortunately, opportunities for help are available for HD patients, and the situation in North Carolina has improved. Duke University Medical Center, UNC Adult Genetics Clinic, and Wake Forest University Baptist Medical Center provide specialized care for HD patients and their families. Even though current treatments do not slow disease progression, interventions offer substantial symptomatic relief for patients and families, and improve quality of life.
The North Carolina Center for the Care of Huntington’s Disease (NC-CCHD), now known as HD Reach, was formed in 2009 to address the pressing need for a communication network connecting HD patients and their families with experts and available resources. The mission to improve access to quality healthcare, education, and social assistance for North Carolinians has been achieved in urban areas associated with the clinics run in these three hospitals. The services provided include streamlined access to quality providers, crisis intervention services, case management, timely diagnosis and disability approval, family education and support, attention to the behavioral and psychiatric symptoms of HD, and guidance through the long term and hospice care processes. Through delivery of these services, the quality of life for HD patients and their families has greatly increased.
The challenge ahead is to bring access to these services to all HD families in North Carolina. We have recently met this challenge, for example, in the greater Charlotte area. There, through engagement with local community leaders and by the efforts of an HD Reach-trained-and-supervised support group facilitator, we are gaining momentum in the creation of a true HD community. We believe this model can be duplicated in other geographic areas across our state.
We hope you will join us in reaching out to all in North Carolina who suffer from HD. There remains a need to aid North Carolinians who continue to suffer unnecessarily from this challenging disease. Our vision is to aid ALL people with Huntington’s disease and their families, and, through that assistance, to ultimately reduce their unnecessary suffering. The opportunity to make a difference for HD families energizes our efforts because we know that the rewards will be great.
All HD Reach programs are funded entirely by charitable donations.