The designation includes $50,000 a year in funding to help support a multidisciplinary team of health care professionals with expertise in Huntington's disease. The team will provide comprehensive medical and social services as well as education, outreach and research opportunities to the HD community.
"The addition of Rush University Medical Center means that our HD families living in Illinois and the surrounding region will no longer have to travel several hundred miles to receive the exceptional quality of care offered by an HDSA Center of Excellence," said Barbara Boyle, HDSA National Executive Director/CEO. "We look forward to working with the staff at Rush University Medical Center to make this an outstanding Center of Excellence."
"The movement disorders physicians at Rush have been providing state of the art care of persons with Huntington's disease for more than 30 years, said Dr. Kathleen M. Shannon, director of the HDSA Center at Rush. "With each new generation of affected persons, our commitment to this worthy patient family grows. Huntington's disease is a devastating inherited disease, but we are poised on the threshold of discovering effective treatments. This grant will allow us to increase our commitment to this deserving community."
The HDSA Center of Excellence at Rush will offer neurologic, psychiatric, psychologic, genetic, nursing, social work, therapy and family services. "The center plans to provide neurologic care at John H. Stroger Jr. Hospital of Cook County and to explore the creation of a regional network of care providers, including end-of-life care," said Shannon.
In addition, Rush is part of the Huntington Study Group (HSG), a consortium of clinical investigators in HD. This group with an international database aims to increase awareness of the clinical features of Huntington's disease including the rate of disease progression.
The affiliation with the HSG gives Rush patients and families access to clinical trials investigating the natural history of the illness, the importance of genetic and environmental factors on the onset, development and progression of the illness, and new treatments for the disease and its symptoms.
Huntington's Disease is an inherited degenerative disease that progressively robs patients of the ability to think, judge appropriately, control their emotions and perform coordinated tasks. Huntington's Disease typically begins in mid-life, between the ages of 30 and 50. Each child of an affected parent has a 50 percent risk for inheriting the disease. There is no effective treatment or cure for this fatal illness that affects 30,000 Americans and places another 200,000 at risk.
In addition to Rush, the other new HDSA Centers of Excellence are located at UCLA, Indiana University and the University of South Florida. The Huntington's Disease Society of America currently sponsors 17 other HDSA Centers of Excellence across the country.
Core members of the HDSA Center of Excellence at Rush r include Dr. Kathleen Shannon, center director; Jean Jaglin, RN, center coordinator; Dr. Melany Danehy, psychiatrist; and Brian Bernard, PhD, senior clinical neuropsychologist.
Rush University Medical Center includes the 729-bed Presbyterian-St. Luke's Hospital; 79-bed Johnston R. Bowman Health Center; Rush University (Rush Medical College, College of Nursing, College of Health Sciences and the Graduate College).
The Huntington's Disease Society of American (HDSA) is the only voluntary non-profit health agency dedicated to both the care and cure of Huntington's disease. HDSA consists of more than 35 volunteer based chapters and affiliates, more than 150 support groups, twelve regions, 21 HDSA Centers of Excellence, 18 senior research investigators who comprise HDSA's prestigious research program, the HDSA Coalition for the Cure and more than 25 Grants and Fellowship recipients. In 2003, HDSA funded more than $3.5 million in HD research and more than $4 million in care including the HDSA Center of Excellence program.