Recognizing the long-standing need in our state 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 well removed from these clinicians. Each of the three main tertiary care centers with HD expertise has a unique contribution to make to clinical care, but a full collaboration at a single location has up until now been limited by institutional and geographic separations.
For these reasons, the concept of a “virtual” care center involving the three principle clinical sites were created to collaborate and share resources among these tertiary care centers, and to do so in such a way that care can be brought to HD patients and their families 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 Non-Profit Corporation status by the following 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, accurate education, and reliable social resources. On July 29, 2009, NC-CCHD received 501(c)(3) tax-exempt status. Outreach began to grow to larger geographical areas like Raleigh, Charlotte, and Winston-Salem, then onto 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 paramount then, and still is for acquiring resources and necessary services.
In 2013, our name was changed 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 affected 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 toward growing and refining clinical programs and expanding across NC.