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 and a trial of oral sirolimus for cognitive impairments in Sturge-Weber syndrome. Dr. Comi has also recently carried out a clinical trial of Epidiolex for cognitive impairments in Sturge-Weber syndrome as well.
The faculty and staff of the Hunter Nelson Sturge-Weber 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, we advance knowledge of Sturge-Weber syndrome through research that spans basic science, translational research and clinical trials, and we teach and train the pediatricians of tomorrow in the art and science of caring for patients with rare diseases.
The goals of the Hunter Nelson Sturge-Weber Center are to:
- Provide comprehensive clinical care of patients with Sturge-Weber syndrome
- Educate patients, families, and physician medical educational services about Sturge-Weber syndrome
- Conduct clinical and translational laboratory research to improve future treatment for Sturge-Weber syndrome
Sturge-Weber Annual Virtual Family Conference
Conference topic: Adults Living with Sturge-Weber Syndrome
Date and time: May 17, 2025, 10 a.m. to 2 p.m.
Join us for our annual Sturge-Weber Syndrome Virtual Family Conference on Saturday, May 17. The symposium’s presentations will help those living with Sturge-Weber syndrome and their family members learn more about—and manage—their condition.
Expanded Telehealth Services Now Available
Dr. Comi is a member of the Interstate Medical Licensure Compact (IMLCC), and can offer telehealth services for Sturge-Weber syndrome patients in Nevada, Tennessee and Minnesota. This is in addition to telehealth services already offered to patients in Maryland. For more information, call (443) 923-9569 or (443) 923-9127, or request an appointment online.
Comprehensive Services for Patients
Expanded Clinic Services
More Frequent! Director, Sturge Weber Expert, and Neurologist, Dr. Anne Comi: Evaluation of patients at risk for Sturge-Weber syndrome (SWS), and neurologic or developmental issues related to SWS
When: Now every Wednesdays afternoon and Fridays.
Where: Kennedy Krieger Outpatient Center
Back in Person! Multidisciplinary visits coordinated between Kennedy Krieger SWS Experts: Evaluation by neurology (Comi), Medical Rehabilitation (Dr. Stacy Suskauer), Neuropsychologist (Dr. T. Andrew Zabel) and OT/PT therapists.
When: Continues every 1st Friday of the Month
Where: Kennedy Krieger Outpatient Center
Multidisciplinary Coordinated Visits with Kennedy Krieger and Johns Hopkins experts: Welcomes Dr. Courtney Krauss (Glaucoma), Dr. Nara Sobriera (Genetics) and Dr. Anna Grossberg (Vascular Dermatology) providing coordinated SWS visits, as needed, for out-of-state patients, along with Dr. Comi, and Kennedy Krieger experts.
When: Now Wednesdays to Fridays
Where: Kennedy Krieger and Johns Hopkins Broadway campus
Coordinated Sturge Weber multidisciplinary care with Dr. Comi and Johns Hopkins epileptologist Dr. Ahmed Marashly: For patients with SWS and medically refractory epilepsy and for education regarding surgical options.
When: Now second Friday of the month
Where: Kennedy Krieger Outpatient Center
Support Our Work
Our ability to further advance key areas of Sturge-Weber syndrome research depends on financial support from individuals who understand and believe in our mission. This support will enable us to achieve the best for our patients through scientific discovery, clinical care, and education and training.
With the recent discovery of the cause of SWS, we have begun to investigate new treatments. We urgently need your support to develop and test these treatments that have the potential to radically improve the lives of those living with SWS.
Every gift we receive will help us advance our mission. Your generosity will directly impact patients and families, and the medical community that seeks to help them.
Donate now! Create a Fundraising Page
Ask Dr. Comi
Would you like to receive Dr. Comi's updates by email? Do you have a topic or question you would like to see addressed with a future Update?
Please click the link below to contact Dr. Comi. She will be in touch through email with a response.
