Title:Cura familia helps Huntington’s disease patients

The Huntington’s Disease Care, Education, and Research Center (HD-CERC) at Georgetown University Medical Center and MedStar Georgetown University Hospital, established a decade ago thanks to an anonymous alumnus donor, supports 250 patients and their families through the Jesuit principle of cura familia, care for the whole family.

Huntington’s disease (HD) is a neurodegenerative condition with no known cure. It can be hard to diagnose, and the symptoms may strain family relationships. Early HD symptoms range from the inability to stay on task to depression, anxiety, irritability, and anger. Later symptoms include more pronounced personality changes, as well as impaired judgment, involuntary movements, slurred speech, and difficulty swallowing, so full-time care is often required.

When his wife received her HD diagnosis more than 10 years ago, the alumnus turned to the care team at Georgetown. Inspired by their commitment, he decided to dedicate his foundation’s philanthropy to supporting clinical care for HD patients and their families, many of whom are challenged by the demands and expenses of everyday care.

“Improving care enables HD patients and families to achieve a meaningful quality of life while they wait for better treatments,” says the anonymous donor.

At Georgetown’s center, patients receive access to a neurologist, neuropsychologist, neuropsychiatrist, speech therapist, occupational therapist, and clinical trials for emerging therapies. Family members receive support from a full-time social worker and genetic counseling from a geneticist, and help with disability applications, placement in long-term care facilities, and training facility staff to care for people with HD.

“HD patients require a sophisticated level of care,” shares the anonymous donor. “It’s complicated because there are a lot of moving parts. We need to know there are people we can call that day for help.”

Better family care can also lead to better research outcomes for patients. Dr. Karen Anderson, HD-CERC director and professor in Georgetown’s Department of Psychiatry and Department of Neurology, explains that when patients are less emotionally volatile, they are eligible for more treatment options and can be part of the research to find a cure.

“What happens at home makes a difference,” she says. “Patients who are stable can participate in research studies.”

Georgetown offers seven clinical trials or observational studies for HD patients, thanks to HD-CERC’s research reputation, the level of care it provides, and the high retention rate.

“Providing good clinical care enables us to move the science forward,” she says.

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