AKRON, Ohio – Akron Children’s Hospital has opened a Leukodystrophy and Rare Neurologic Disease Clinic on the fourth floor of the hospital in the NeuroDevelopmental Science Center.
The new clinic provides diagnosis and treatment of leukodystrophies and other progressive, neurogenetic diseases.
Leukodystrophies are a group of more than 50 neurological disorders. These disorders are inherited and affect the myelin, the protective covering on nerves, in the brain. Leukodystrophies are progressive and usually cause loss of neurological function in infants and children.
The Leukodystrophy and Rare Neurologic Disease Clinic is multidisciplinary and includes providers from neurology, complex care pediatrics, a genetic counselor and a nurse coordinator. Additional specialties will be added based on patient needs.
“Facing a rare disease can be intimidating and lonely. The Leukodystrophy and Rare Neurologic Disease Clinic aims to make it a little less scary and confusing,” said Dr. Matt Ginsberg, clinic director and founder, pediatric neurologist and The James F. and Marguerite A. Pearson Endowed Chair in NeuroDevelopmental Sciences for Rare Diseases.
“I was lucky enough to meet a patient with a leukodystrophy called Alexander disease. Her grandparents created an endowed chair at Akron Children’s with the hope of advancing care for patients like her, and that was the catalyst for crafting the program,” Ginsberg said.
Ginsberg said he hopes the clinic will also be able to serve the expanding number of patients diagnosed with leukodystrophy by newborn screening and provide access to the newest therapies as they become available.
Clinic hours are 8:30 a.m. to 4:30 p.m. Monday through Friday. To schedule an appointment, call the NeuroDevelopmental Science Center at 330 543 8050.