BALTIMORE, November 18, 2025 —Kennedy Krieger Institute has been awarded an $8.17 million grant from the National Institutes of Health to establish and lead a first-of-its-kind network in the U.S. dedicated to advancing treatments for Batten diseases, a group of rare pediatric neurodegenerative disorders.
The grant positions Kennedy Krieger as the coordinating center for the 14-site Batten Disease Clinical Research Consortium (BDCRC). Under the direction of Dr. Erika Augustine, Director of Kennedy Krieger’s Batten Disease Center of Excellence, the BDCRC will be headquartered at Kennedy Krieger which and the will serve as the scientific and administrative hub for the network.
“The BDCRC represents a major opportunity to close critical gaps in knowledge about Batten diseases and readiness to design and launch clinical trials,” Dr. Augustine said. “By uniting leading academic centers and advocacy partners, we are laying the groundwork for meaningful advances.”
Batten diseases, also called neuronal ceroid lipofuscinoses, are inherited neurogenetic disorders that often cause vision loss, motor and cognitive decline, seizures, and even premature death. More than a dozen subtypes of Batten disease exist, and most do not have effective treatments.
Kennedy Krieger will become part of the Rare Diseases Clinical Research Network (RDCRN), and work closely with Our Promise to Nicholas Foundation, and Batten Disease Support, Research, and Advocacy Foundation (BDSRA), ensuring patient perspectives are emphasized. Amy Fenton Parker, the President and CEO of the BDSRA Foundation, says this will help guide research priorities.
“This grant is extraordinary news for the Batten community,” said Parker. “The BDSRA Foundation is thrilled to collaborate with Kennedy Krieger and the BDCRC to help keep the Batten community's research priorities front and center, while new ideas are pursued toward unmet needs for clinically relevant and effective treatments."
The project is funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute of Neurological Disorders and Stroke (NINDS), and the National Center for Advancing Translational Sciences (NCATS).
BDCRC sites include Boston Children’s Hospital, Children’s Hospital Colorado, Children’s Hospital of Orange County, Eunice Kennedy Shriver National Institute of Child Health and Human Development, Nationwide Children’s Hospital, NYU Langone Health, Rush University, Sanford Research, University of Michigan, University of North Carolina at Chapel Hill, University of Rochester, and Washington University in St. Louis. A national Batten disease biorepository will also be launched to provide a foundation for future discoveries.
RCDRN will post updates on the project with work beginning soon. Visit our website to learn more about additional Batten disease research underway at Kennedy Krieger Institute.
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About Kennedy Krieger Institute
Kennedy Krieger Institute, an internationally known, non-profit organization located in the greater Baltimore/Washington, D.C. region, transforms the lives of nearly 30,000 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 or 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 pioneer new interventions and methods of early diagnosis, prevention and treatment. Visit www.KennedyKrieger.org/ for more information about Kennedy Krieger.
