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Our Mission

The Sturge-Weber Foundation (The SWF) global mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port-Wine Birthmark conditions through tenacious collaboration with clinical partners and pioneers, education, advocacy, research and friendly support. Learn more and get involved.

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The Sturge-Weber Foundation (SWF) Transitions Chief Scientific Officer

The Sturge-Weber Foundation is pleased to announce the transition of our Chief Scientific Officer. Jonathan Pevsner, PhD, Kennedy Krieger Institute in Baltimore, MD has been leading the strategic scientific initiatives which under his direction and research identified the GNAQ gene mutation as the cause of Sturge-Weber syndrome. “Dr. Pevsner has been wonderful to work with and his natural curiosity and drive have been immensely helpful to furthering our understanding of Sturge-Weber syndrome (SWS). We are excited for him as he leaves to pursue a new career at the National Institute of Mental Health as Director of Genetic Research Division,” said Karen L Ball, President and CEO. 

Matthew Shirley, PhD, Senior Expert Data Scientist, Novartis Institutes of Biomedical Research, Cambridge, MA will transition into the Chief Scientific Officer role for the SWF. Dr. Shirley’s work in the field of oncology and genetics and the field of biomedical research will be very beneficial as the SWF moves into the next phase of research and drug development. Dr. Shirley is noted for discovering the causative SWS somatic mutation using whole genome sequencing while a Ph.D. candidate in Dr. Pevsner’s lab.

The Sturge-Weber Foundation is a 501(c)3 organization that raises funding for critical research and therapies in the treatment of Sturge-Weber syndrome.  For additional information on the Foundation’s work, please visit the Sturge-Weber Foundation’s website at or contact the Foundation via email at