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The Hunter Nelson Sturge-Weber Syndrome Center

The groundbreaking identification of the gene that causes Sturge-Weber syndrome was discovered at the Kennedy Krieger Institute in 2013 by Dr. Anne Comi and her collaborators. 

This discovery has drastically revolutionized our medical understanding of Sturge-Weber syndrome and laid the groundwork for clinical trials. Since that time, Dr. Comi has carried out a successful clinical trial of Epidiolex for refractory seizures in Sturge-Weber syndrome recently published in Pediatric Neurology and is currently overseeing a trial of oral sirolimus for cognitive impairments in Sturge-Weber syndrome. 

The faculty and staff of the Hunter Nelson Sturge-Weber Syndrome Center at Kennedy Krieger Institute are dedicated to providing the highest quality of comprehensive care for patients with Sturge-Weber syndrome. Children with Sturge-Weber syndrome require skillful management by an expert team including neurologists, dermatologists, ophthalmologists, neuropsychologists, physical therapists, occupational therapists, and medical rehabilitation specialists. Simultaneously, the center advances knowledge of Sturge-Weber syndrome through research that spans basic science, translational research and clinical trials, and staff teach and train the pediatricians of tomorrow in the art and science of caring for patients with rare diseases.  

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