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.