BALTIMORE, October 15, 2024 – Kennedy Krieger Institute has been named a Center of Excellence for its clinical care, support and research of Batten disease. The Institute is one of five centers in the United States to receive this honor from the Batten Disease Support, Research, & Advocacy Foundation, (BDSRA).
The BDSRA Foundation relaunched its Centers of Excellence designations recently, and through this national network, hopes to increase access to the best possible clinical care for patients with Batten disease and their families.
Batten disease is a family of diseases caused by genetic mutations that interfere with the cell’s ability to break down waste. Symptoms of Batten disease can include seizures, visual impairment, cognitive and behavior changes, and a loss of motor skills, among others. The rare illness is diagnosed through genetic testing and typicially begins in childhood.
“It is an honor to be named a Center of Excellence, and it is also an important step in our efforts as we work to expand care and research focused on people affected by Batten diseases,” said Erika Augustine, MD, MS, a child neurologist who directs the Institute’s Batten Disease Clinic. “This network allows for increased collaboration, which means the excellent care we seek to provide will reach a greater number of patients.”
Dr. Augustine also is associate chief science officer and director of the Institute’s Clinical Trials Unit.
Kennedy Krieger’s Batten Disease Clinic provides patients with access to specialists in neurology, neuropsychology, genetic counseling, psychiatry, nursing, physical therapy, social work, and palliative care. In addition, patients have access to ophthalmology and cardiology specialists at The Johns Hopkins Hospital.
In 2021, Kennedy Krieger, in partnership with Johns Hopkins Medicine, was named a Center of Excellence by the National Organization of Rare Disorders (NORD) for its leadership in diagnosing and caring for people with rare diseases. In addition to Batten disease, the Institute treats hundreds of other rare diseases.
“We are proud of the fact that Kennedy Krieger is a place where families turn to for the medical expertise they cannot receive elsewhere. In many instances, a rare disease is not rare to us because we treat many patients with the same diagnosis,” said Brad Schlaggar, MD, PhD, president and CEO of Kennedy Krieger Institute. “This why networks like the BDRSA-established Centers of Excellence continue to be important. They enable critical continuity in both care and research.”
To learn more about Batten disease or BDSRA, visit this link.
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About Kennedy Krieger Institute:
Kennedy Krieger Institute, an internationally known nonprofit organization located in the greater Baltimore-Washington, D.C., region, transforms the lives of more than 27,000 individuals a year through inpatient and outpatient medical, behavioral health and wellness therapies; home and community services; school-based programs; training and education for professionals; and advocacy. Kennedy Krieger provides a wide range of services for children, adolescents and adults with diseases, disorders and injuries that impact the nervous system, ranging from mild to severe. The Institute is home to a team of investigators who contribute to the understanding of how disorders develop while at the same time pioneering new interventions and methods of early diagnosis, prevention and treatment. Visit KennedyKrieger.org for more information about Kennedy Krieger.
