BDSRA Foundation Announces Mount Sinai Health System as New Site in Clinical Centers of Excellence Program

BDSRA Foundation Announces Mount Sinai Health System as New Site in Clinical Centers of Excellence Program

The BDSRA Foundation has officially announced Mount Sinai Health System as the newest site in the Batten Disease Clinical Center of Excellence Program.

"We are delighted to welcome Mount Sinai Health System as the newest Affiliate Center in our Centers of Excellence Program," said Program Lead Ineka Whiteman, PhD. "This important designation not only expands our national network to 10 participating centers but also strengthens our shared commitment to ensuring families have access to comprehensive, expert care close to home."

Mount Sinai Health System, located in New York City, becomes the fifth Batten Disease Center of Excellence Affiliate Center, joining C.S. Mott Children's Hospital at University of Michigan Medicine, NYU Langone Health, Rush University Medical Center, and UNC Hospitals. An additional five sites across the United States have received the "Center of Excellence" designation.

The Clinical Centers of Excellence Program is a national network of Centers that aims to provide the highest level of comprehensive Batten-specific care for patients and their families. Together, the Centers aim to optimize patient outcomes, accelerate clinical research, and improve the quality of life for individuals affected by Batten disease and their families.

"Expanding the Centers of Excellence has been part of our long-term vision of offering crucial support for Batten families," said BDSRA President & CEO Amy Fenton Parker. "So, we are glad to bring them into the fold."

Visit bdsrafoundation.org/batten-disease-centers-of-excellence to learn more.

What is Batten disease?

Batten disease or Neuronal Ceroid Lipofuscinosis (NCL) is a family of inherited neurodegenerative disorders that primarily affect the central nervous system. It is characterized by the buildup of waste materials in cells, leading to a range of symptoms including vision loss, seizures, cognitive decline, and motor skill deterioration, ultimately resulting in early death. There are 13 known forms of Batten disease, named according to the affected NCL gene (CLN1 disease to CLN14 disease - there is no CLN9). It is estimated that 2-4 births per 100,000 in the U.S. are affected by Batten disease. Currently, there is no cure for Batten disease.

About the Mount Sinai Health System

Mount Sinai Health System is one of the largest academic medical systems in the New York metro area, with 48,000 employees working across seven hospitals, more than 400 outpatient practices, more than 600 research and clinical labs, a school of nursing, and a leading school of medicine and graduate education. Mount Sinai advances health for all people, everywhere, by taking on the most complex health care challenges of our time-discovering and applying new scientific learning and knowledge; developing safer, more effective treatments; educating the next generation of medical leaders and innovators; and supporting local communities by delivering high-quality care to all who need it.

Through the integration of its hospitals, labs, and schools, Mount Sinai offers comprehensive health care solutions from birth through geriatrics, leveraging innovative approaches such as artificial intelligence and informatics while keeping patients' medical and emotional needs at the center of all treatment. The Health System includes approximately 9,000 primary and specialty care physicians and 10 free-standing joint-venture centers throughout the five boroughs of New York City, Westchester, Long Island, and Florida. Hospitals within the System are consistently ranked by Newsweek's^® "The World's Best Smart Hospitals, Best in State Hospitals, World Best Hospitals and Best Specialty Hospitals" and by U.S. News & World Report's^® "Best Hospitals" and "Best Children's Hospitals." The Mount Sinai Hospital is on the U.S. News & World Report^® "Best Hospitals" Honor Roll for 2025-2026.

For more information, visit https://www.mountsinai.org or find Mount Sinai on Facebook, Instagram, LinkedIn, X, and YouTube.