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 nation’s leading integrated academic health systems and one of the largest in the New York metropolitan area. Its comprehensive system includes seven hospitals, more than 400 outpatient practices, over 600 research and clinical laboratories, the Icahn School of Medicine at Mount Sinai, the Graduate School of Biomedical Sciences, and the Mount Sinai Phillips School of Nursing. Together, the Health System comprises approximately 48,000 employees, more than 9,000 physicians, and 8,600 nurses.
As a leading learning health system, Mount Sinai combines clinical expertise with scientific discovery to improve patient care while training the next generation of health care and biomedical leaders. The Health System provides care across every stage of life, from prenatal care through geriatrics, while advancing personalized medicine through artificial intelligence, data science, and biomedical research.
Mount Sinai is consistently recognized among the nation’s leading academic health systems for patient care, research, and education. The Mount Sinai Hospital is ranked No. 1 in New York by Newsweek and No. 5 on the magazine’s World’s Best Hospitals list. The Icahn School of Medicine at Mount Sinai ranks No. 11 among U.S. medical schools and No. 1 among freestanding medical schools for National Institutes of Health funding, reflecting the strength of its scientific enterprise and leadership in biomedical research.
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