Sarah Goodwin

Kathi Ovnic
Holly Korschun
June 1, 1998

ATLANTA -- The nation's first Huntington's Disease Society of America Center of Excellence recently opened at Emory University.

The center's clinical services are based primarily at Wesley Woods Health Center and research will be conducted in the Department of Neurology of the Emory University School of Medicine.

"We are honored and enthusiastic to be partnering with the Huntington's Disease Society of America (HDSA) to increase the array of services we may offer patients and their families -- and to be able to intensify our research into prevention and searching for a cure," says Center Co-Director Steven M. Hersch, M.D., Ph.D., associate professor of Neurology at the Emory University School of Medicine.

Though recognized for more than a decade as the leading site for Huntington's disease treatment and research in the southeastern United States, center designation provides the Emory program important resources to further expand its efforts.

The HDSA Center of Excellence at Emory University is also intended to serve as a model to be replicated by the Huntington's Disease Society of America at other medical centers. Dr. Hersch is chairing the HDSA advisory committee charged with planning other, similar centers.

"This center and the ones that will follow will enable us to make a real difference in the lives of families affected by Huntington's disease," says Barbara Boyle, HDSA's national executive director.

Huntington's disease is an inherited neurologic disorder. The jerky, involuntary choreic movements and progressive dementia associated with it are caused by the selective loss of brain cells in the basal ganglia and other regions of the brain.

Early symptoms may include depression, mood swings, forgetfulness, lack of coordination, personality changes and slurred speech. Within 10 to 25 years, patients lose mental capacity and physical control. Death results from complications such as infection, pneumonia or heart failure. No cure is available.

HDSA backing will allow the Emory center to provide patients greater access to allied health services such as physical therapy and social work.

"After the diagnosis is made and an appropriate medication treatment plan has been designed, patients do not require as much of a physician as they do experts in physical, occupational and speech therapy who have been trained to counter many of the symptoms of Huntington's disease," says J. Timothy Greenamyre, M.D., Ph.D.,

co-director of the center and professor of Neurology and Pharmacology at Emory. "Creation of the HDSA Center of Excellence lets us purchase many of these essential services for patients and ease some of the enormous financial burden felt by even the most well-insured patients and their families."

Ongoing social support such as on-site social work consultations for patients and their family members, counseling during genetic testing and psychiatric evaluations for persons in the later stages of disease are being bolstered. Research efforts are being stepped up, as well. Center designation means Emory neurologists specializing in Huntington's disease may vie for even more clinical trial grant funding -- thus providing patients more access to the very latest experimental treatments. It also means Emory scientists may continue their groundbreaking basic research into the genetics of the disease and the development of compounds to treat it.

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