Nationwide Children's Hospital Chosen as Batten Disease Center of Excellence

July 22, 2010

Nationwide Children’s Hospital has been selected as a Center of Excellence by the Batten Disease Support and Research Association (BDSRA), the largest research and support organization in North America for families that have children with Batten disease. BDSRA chose Nationwide Children's because of its clinical and research history with the disease and its ability to provide comprehensive care for these unique children.

Batten disease, which is a form of neuronal ceroid lipofuscinoses, is a congenital, progressive and terminal neurological disease. Children with Batten disease have cognitive impairment, seizures and progressive loss of milestones.

“The designation of a Batten Disease Center of Excellence means families will have a medical facility where they know their child will be seen by medical professionals with expertise on the disorder and a facility equipped to care for them,” said Lance W. Johnston, executive director of BDSRA. “Nationwide Children’s is the perfect place to establish the first Batten Disease Center of Excellence.”

Nationwide Children's Hospital is one of only three organizations in the U.S. designated by the BDSRA as a Center of Excellence. This designation assures that Batten disease patients and their families will receive comprehensive care which meets all of their needs.

“The work of Dr. Emily de los Reyes has been instrumental in helping establish the Center,” said Johnston. “Her work, along with that of Nurse Practitioner Sally Steward, has shown that they have the heart and compassion to provide the very best care possible.”

“Families of children with Batten disease face a difficult road,” said Neurology Chief E. Steve Roach, MD. “It’s challenging to find a hospital or physician that specializes in their unique needs. We are honored to be among the first to receive this designation and look forward to continuing our ongoing collaboration with BDSRA.”

At Nationwide Children's Hospital, Batten disease patients are evaluated and cared for by a multidisciplinary team that includes pediatric neurologists, pediatric nurse practitioners, registered nurses, social workers and genetic counselors. Additional consultations are available from pediatric cardiologists, pulmonologists and gastroenterologists. Emily de los Reyes, MD, a pediatric neurologist, is the lead clinician of the Batten Disease Clinic at Nationwide Children's.

Established in 1987 by a group of parents seeking strength and support, BDSRA focuses on providing information, supporting families and promoting research efforts. It is the only family support organization specific to Batten disease. The organization currently serves more than 1,200 families in the United States, Canada, South America, Australia, New Zealand and South Africa.

Additional information about BDSRA can be found at www.bdsra.org. Additional information about the Neurosciences Center at Nationwide Children’s Hospital can be found at www.NationwideChildrens.org/Neurosciences.

About Nationwide Children's Hospital

Named to the Top 10 Honor Roll on U.S. News & World Report’s 2017-18 list of “America’s Best Children’s Hospitals,” Nationwide Children’s Hospital is one of America’s largest not-for-profit freestanding pediatric healthcare systems providing wellness, preventive, diagnostic, treatment and rehabilitative care for infants, children and adolescents, as well as adult patients with congenital disease. Nationwide Children’s has a staff of nearly 13,000 providing state-of-the-art pediatric care during more than 1.4 million patient visits annually. As home to the Department of Pediatrics of The Ohio State University College of Medicine, Nationwide Children’s physicians train the next generation of pediatricians and pediatric specialists. The Research Institute at Nationwide Children’s Hospital is one of the Top 10 National Institutes of Health-funded freestanding pediatric research facilities. More information is available at NationwideChildrens.org.