Earns $10,000 grant to treat Huntington’s disease
LOUISVILLE, Ky. (April 15, 2016) — University of Louisville Physicians’ Movement Disorders Clinic has been named a national Center of Excellence in treating Huntington’s disease and received a $10,000 grant from the Huntington’s Disease Society of America.
The designation recognizes work at UofL Physicians to help improve the lives of people affected by the disease. HDSA Centers of Excellence provide an elite multidisciplinary approach to care and research. There are currently 39 across the U.S., including UofL Physicians.
“We are proud to be the first center in Kentucky to be recognized as a HD Center of Excellence,” said Dr. Kathrin LaFaver, a neurologist who leads the Huntington’s disease program at UofL Physicians. “We are planning to expand our involvement with the HD community and offer participation in future research studies.”
Patients at the Centers of Excellence benefit from expert neurologists, psychiatrists, therapists, counselors and other professionals who have deep experience working with patients and families affected by Huntington’s disease, and who work collaboratively to help them plan the best program of care throughout the disease’s course.
Debbie Holloway, who is affected by Huntington’s disease, is currently enrolled in a clinical trial at UofL Physicians. She had in the past regularly traveled four hours round trip to a center in Indiana for treatment because of its designation as a Center of Excellence.
“We feel so thankful and blessed to now have a Center of Excellence here in Louisville,” she said. “My family is affected and we definitely want to do anything we can to help find a cure. Now when a new research program comes in, someone in my family may be able to participate. And it is wonderful to have my doctor here.”
Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and to date has no cure. Patients affected by the disease develop chorea (involuntary movements), difficulties with cognition and often psychiatric manifestations such as depression and irritability.
HD is inherited in an autosomal dominant fashion, meaning every child of a parent with HD has a 50/50 chance of carrying the disease mutation. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at risk of inheriting the disease.
Many describe the symptoms of HD as though they have ALS, Parkinson’s and Alzheimer’s simultaneously.
As part of the efforts to help patients with the disease, patients are being recruited for the ENROLL-HD worldwide observational study for HD families. The goal is to track HD progression and create a database that doctors can learn from and use for treatment studies as they emerge.