NC Universities, Medical Schools and Nonprofit Design Model to Improve Quality of Life with Huntington’s Disease

Duke, UNC, Wake Forest Baptist and nonprofit HD Reach collaborate to help patients and families with Huntington’s disease

HD Reach is a nonprofit organization dedicated to helping patients and families affected by Huntington’s disease. Through active collaboration with universities, medical schools, leading physicians and researchers, North Carolina is now a model in providing care for patients of this brain disorder that affects control of movement, thought and behavior.

More than 30,000 Americans have been diagnosed with Huntington’s disease, or HD, and at least 250,000 others are at risk of having inherited HD from a parent.

No treatment has been found to halt or slow the progressive loss of mental faculties and physical control from HD, which typically results in death 15 to 25 years after onset of motor signs of the disease. HD can strike at any age, typically beginning between age 35 and 45.

“We are fortunate to have an active medical collaboration between Duke, UNC, Wake Forest and HD Reach to create coordinated multidisciplinary care that extends to communities statewide,” explains Dr. Mary Edmondson, president of HD Reach. “There is a sense of futility about the management of HD symptoms in both HD and medical communities. We are dedicated to changing this misperception.”

“There is something you can do about Huntington’s disease,” says Edmondson, a clinical associate in psychiatry at Duke University. “We can treat symptoms. Patients and families can do things now to make life better.”

With funding available to support research and development, “there’s never been a more encouraging time than right now. Delivering that message to patients, families and physicians is critical,” she says.

Due in large part to this collaborative model, Charlotte was selected as the site of the 7th Annual Huntington Study Group Clinical Research Symposium, expected to attract leading scientists and medical professionals from North America, South America, Europe and Australia.

“Charlotte was the first site where we developed a successful outreach to community care. The symposium is a key piece in the development of that outreach program as it addresses quality of care through provider education. Our aim is to develop an informal network of providers to develop collaborative care in the community supported by expert care at the tertiary care center,” explains Edmondson.

Workshops preceding the Charlotte symposium include networking for regional doctors and health care providers, continuing education for medical professionals, and training programs for service providers, caregivers and local practitioners.

The symposium will feature reports on the latest research on Huntington’s disease, followed by an interactive community workshop, including discussion between patients, their families and researchers.

Workshops and the symposium will be held November 7-9 at the Omni Hotel in Charlotte.

“The international symposium provides an excellent opportunity to increase HD awareness and continue moving forward in discovering treatments,” says Edmondson.

The symposium will be hosted by Huntington Study Group (HSG), an international network of clinical researchers who study and care for patients and families with Huntington’s disease.



8 Condivisioni