Children’s National named Batten Disease Center of Excellence Affiliate Center
The Leukodystrophy and Myelin Disorders Program within the division of Neurology at Children’s National Hospital has been designated a Batten Disease Center of Excellence Affiliate Center by the Batten Disease Support, Research, and Advocacy Foundation (BDSRA).
This designation recognizes neurology programs committed to delivering high-quality, multidisciplinary care while advancing research and supporting families affected by Batten disease.
“On behalf of Children’s National, we are honored to receive an Affiliate Center designation from the Batten Disease Clinical Centers of Excellence Program,” said Laura Tochen, MD, neurologist and co-director of the Leukodystrophy and Myelin Disorders Program. “We look forward to working with our fellow Centers of Excellence to ensure the highest quality of support and care for Batten disease patients and collaborating on key research developments.”
Batten disease is a rare, inherited neurodegenerative disorder that primarily affects children. It causes progressive damage to the brain and nervous system, leading to symptoms such as seizures, vision loss, cognitive decline, movement difficulties, behavioral changes and loss of motor and communication abilities over time.
Because Batten disease affects multiple body systems and worsens over time, hospitals must take a multidisciplinary approach to care. No single specialist can manage the full range of medical, developmental and supportive needs. The Batten disease program at Children’s National includes specialists in neurology (movement disorders and epilepsy), genetics, palliative care, physical medicine and complex care pediatrics, ensuring comprehensive, coordinated care for patients and families.
“The continued growth of the Clinical Centers of Excellence Program reflects what is possible when leading institutions commit to working together,” said Ineka Whiteman, PhD, BDSRA Foundation’s head of Research and Medical Affairs. “The addition of Children’s National Hospital strengthens our ability to advance research, share expertise and improve outcomes for individuals living with Batten disease.”
Read more on the BDSRA Foundation website.
