September 8, 1998
Volume 51, No. 3
Huntington's Society opens 'center of excellence' here
The nation's first Huntington's Disease Society of America Center of Excellence is open at Emory.
The center's clinical services are based primarily at Wesley Woods Health Center and research will be conducted in the medical school's Department of Neurology.
"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," said center co-director Steven Hersch, associate professor of neurology.
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.
Emory's program is also intended to serve as a model to be replicated by the HDSA at other medical centers. Hersch is chairing the advisory committee charged with planning other 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," said Barbara Boyle, HDSA's national executive director.
Huntington's is an inherited neurologic disorder affecting about a quarter-million Americans who've already been diagnosed or have a genetic predisposition to the disease. The jerky, involuntary dance-like movements and progressive dementia associated with the disease are caused by the loss of cells in the basal ganglia and other regions of the brain. Those carrying the gene for Huntington's disease eventually will develop it, and their children have a 50 percent chance of inheriting the gene.
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. There is no cure.
HDSA's 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 a physician as much as they do experts in physical, occupational and speech therapy who have been trained to counter many of the symptoms of Huntington's disease," said J. Timothy Greenamyre, co-director of the center and professor of neurology and pharmacology. "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."
Also being bolstered by the partnership are ongoing programs such as those providing social work consultations for patients and family members, counseling during genetic testing and psychiatric evaluations for persons in the later stages of disease. 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, thereby providing patients more access to the latest experimental treatments. It also means Emory scientists may continue their basic research into the genetics of the disease and the development of compounds to treat it.