Batten Research Day fosters collaboration and growth

Apr. 25, 2024

The University of Rochester Intellectual and Developmental Research Center (UR-IDDRC) and the University of Rochester Batten Center (URBC) hosted a Batten Research Day in March. The event brought basic scientists and clinical researchers from across the University of Rochester Medical Center together to share their latest research to advance knowledge about CLN3 Batten disease. CLN3 Batten is a neuronal ceroid lipofuscinosis (NCL) disorder, which are inherited neurodegenerative disorders that cause vision loss, motor and cognitive decline, seizures, and premature death. Most NCL disorders, including CLN3 Batten disease, begin during childhood. Parents of children with CLN3 Batten disease and Amy Fenton Parker, president and CEO of the Batten Disease Support, Research, & Advocacy Foundation (BDSRA), also participated. They offered firsthand experiences and insight into the lived experiences of children and families impacted by Batten disease, and the research priorities for them and the community at large.

“This meeting is to continue to foster and grow the collaboration that exists between people across the University,” said Jennifer Vermilion, MD, assistant professor of Neurology, Child Neurology, and Pediatrics. “This will ultimately help us to move forward in our science.”

“Having families here and being a part of the process is key to our ability to grow our understanding of this devastating disease and improve care,” said John Foxe, PhD, director of the Del Monte Institute for Neuroscience and co-director of the UR-IDDRC. “It is always an important reminder of who we are doing this research for.”

The University has been at the forefront of research and care for CLN3 Batten disease and other NCLs. The University of Rochester Batten Center (URBC) is a recognized leader in the research and treatment of this condition. It is a designated Center of Excellence by the Batten Disease Support and Research Association (BDSRA). In 2020, when the National Institute of Child Health and Human Development (NICHD) designated the University as an IDDRC, the disease became the Center’s principal project, and researchers identifying biomarkers to evaluate the effectiveness of experimental treatments became a renewed focus for faculty at the Medical Center.

Along with the IDDRC, the University has long been a University Center of Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) and Leadership Education in Neurodevelopmental and Related Disabilities (LEND). The University is one of eight institutions with the trifecta of federal awards related to IDDs.