Recognizing the long-standing need for access to all who are afflicted with Huntington’s disease, North Carolina clinicians, scientists, and members of the Board of Directors of the NC Chapter of the Huntington’s Disease Society of America (HDSA) came together in March 2008 to begin discussions about how to improve care and support for HD families in North Carolina.
The main obstacles were clear – while North Carolina is fortunate to have a few key health care providers who currently provide expert care for HD, the vast majority of HD patients and their families are geographically removed from these clinicians. In North Carolina there are three main hospitals that treat Huntington's disease: Duke University Hospital (Durham); Wake Forest Baptist Medical Center (Winston-Salem); and UNC Medical Center (Chapel Hill). Each of these hospitals contribute its own unique perspective/methods to clinical care for HD patients, but a full collaboration at a single location has, until now, been limited by institutional and geographic separations.
For these reasons, the concept of “virtual care centers" involving the three principle clinical sites was created to collaborate and share resources among these hospitals, and to do so in such a way that HD patients and their families receive comprehensive care in all regions of North Carolina.
In May of 2009, the North Carolina Center for the Care of Huntington’s Disease (NC-CCHD) filed for Nonprofit Corporation status by the founding board of directors:
Mary C. Edmondson, MD (President)
Donald Lo, PhD (Vice President)
Christie Vann (Secretary)
Colleen Plott (Treasurer)
Lee Ann Efird
Garris D. Parker, Jr.
So began the journey of improving access to high quality care, valuable education, and reliable social resources. On July 29, 2009, NC-CCHD received 501(c)(3) tax-exempt status. Outreach soon spread to larger geographical areas like Raleigh, Charlotte, and Winston-Salem, then on to smaller communities in an effort to reach people in their home communities and afford easy access to care, support, and education. Engaging and educating supporters was important then, and it continues to be as HD Reach continues to identify new resources and necessary services.
In 2013, we changed our name to HD Reach to better reflect the three-pronged mission/vision to provide access to care, educational opportunities, and social support to HD patients and families afflicted by the disease. Full-time personnel were added to support social work and project management. An Executive Director was hired in 2015 to lead future growth, community collaboration, and improved fundraising. In 2017, efforts have been focused on growing and refining clinical programs and expanding across NC. In 2019, the Pathways program was introduced to help clients chart their course to live their best life. Five unique Paths were added (Anonymous Genetic Testing with counseling, Calming Irritability, Finding Long-term Care, Therapy, and Health Care Training) to provide guidance on critical issues.