First Huntington Disease Center Established in the DC Metro Area
Huntington disease is a hereditary, progressively degenerative brain disorder for which there is no cure. It causes involuntary body movements, cognitive decline, and a host of behavioral disturbances that slowly diminish the ability to walk, talk and reason. Treatment involves a skilled clinical team to make an accurate diagnosis and provide ongoing and comprehensive care.
For families in the Washington, D.C. -area coping with the Huntington disease (HD), there was no local Center where specialists worked collaboratively to treat individuals and their families – until this month.
In July, Georgetown University Medical Center (GUMC) and MedStar Georgetown University Hospital (MedStar GUH) launched the area’s first Huntington Disease Care, Education and Research Center. The Griffin Foundation is supporting the HD Center with the goal of creating of a model for the care of Huntington disease patients and families that provides the clinical support, education and research opportunities needed by families and caregivers in the Washington, D.C. area.
Recognizing the multidisciplinary, collaborative effort needed for a successful care and research program for Huntington disease, MedStar GUH and GUMC marked the launch of the HD Center with an inaugural symposium July 17 at Georgetown that assembled some of the nation’s leading experts in care, education and research of the disease along with support organizations.
“We look forward to helping to improve the lives of people with this disease, help family members, and provide outreach in the community and collaboration with our colleagues. We are fortunate that the Griffin Foundation, MedStar GUH and GUMC are supporting this innovative initiative,” said symposium organizer, Ira Shoulson, M.D., who is serving as interim director of the Center. “The perspective of Georgetown is cura personalis -- taking care of the whole person, the whole family. I cannot think of a better example than this undertaking.”
Shoulson, a professor in the Department of Neurology, is a leading researcher in Huntington disease and founder of the Huntington Study Group, an international academic consortium of clinical researchers from medical centers in the United States, Canada, Europe, Australia, New Zealand and South America.
About 30,000 people in the United States have Huntington disease and about 150,000 individuals carry a 50 percent risk of having inherited the fatal gene.
Creating a consolidated care center for Huntington disease is embraced by national and local Huntington disease organizations, which were represented at the symposium. Louise Vetter, chief executive officer of the Huntington Disease Society of America, explained the importance of coordinated, comprehensive care.
“Providing quality HD care, education and research programs, as echoed in the title of this initiative, are so important to HD families,” Vetter said. “Having a center at Georgetown and relationships with so many proven clinicians with excellence in this area is critical to that.”
Lori Swain, president of the Huntington Disease Society of America/Washington Metro Chapter, told the symposium attendees that collaboration will be key to building a strong Center. “We’re excited to have a partner in Georgetown University, to work with us. Having our current HD social worker, Hope Heller, on board as the Center’s social worker will be something that we’ll now have in common,” she said.
In addition to Shoulson, leadership for the Center will be provided by two clinical co-directors of the Center representing the critical collaboration necessary of neurology and psychiatry in caring for patients and their families. They are Fahd Amjad, M.D., an assistant professor in the Department of Neurology and a member of MedStar GUH’s Movement Disorders Program; and Thomas Cummings, M.D., an assistant professor in the Department of Psychiatry.
“What has brought us all here today …. we can summarize distinctly in leadership, vision, philanthropy, execution, and recognition,” said Howard J. Federoff, M.D., Ph.D., executive vice president for health sciences at GUMC and executive dean of the School of Medicine at GUMC. “The Griffin Foundation has helped to both provide philanthropic support as well as an elevated level of recognition to the importance of HD care in our local area. Dr. Ira Shoulson has driven the vision, while our collaborative doctors have exerted some of the most coherent leadership, who now form the great clinical team to execute the conception of this center as it goes forward.”
“Caring for those with Huntington disease and their families takes a comprehensive and tailored approach,” said MedStar GUH President Richard Goldberg, M.D., prior to the symposium. “Up until now, people with HD have been underserved in the Washington, DC area. This Center changes that.”
In addition to the MedStar GUH location, the Huntington Care, Education and Research Center plans to establish two community-based clinics in Virginia and Maryland to improve access and reduce travel time and inconvenience faced by those with Huntington disease.
By Karen Mallet, GUMC Communications