The Sturge-Weber Foundation Information

Support, integrity, and vision. These qualities have distinguished the Sturge-Weber Foundation (SWF) since 1987. Thousands of people have been served and continue to be served by the SWF's phone support, family networking program, education, physician referral service, medical education programs and research endeavors. The Sturge-Weber Foundation is a 501 (c) (3) non profit organization with an ever increasing worldwide membership and is funded by corporate and private donations, grants and fundraising activities. The SWF was founded by Kirk and Karen Ball. They began searching for answers after their daughter, Kaelin, was diagnosed with Sturge-Weber Syndrome at birth. The SWF was incorporated in the USA in 1987 as an International 501(c)(3) non-profit organization for patients, parents, professionals and others concerned with Sturge-Weber Syndrome (SWS). In 1992, the mission was expanded to also support and serve individuals with capillary vascular birthmarks, Klippel Trenaunay (KT) and Port Wine Birthmarks. Sturge-Weber Syndrome is a congenital medical condition characterized by facial Port Wine birthmark and varying degrees of glaucoma and/or seizure disorder. It is not contagious. One or more of the following symptoms may result: seizures, developmental delays, glaucoma, paralysis, migraines, ischemic stroke, tissue overgrowth, endocrine issues, organ irregularities, partial loss of visual field. In 2013 the GNAQ gene mutation responsible for Sturge-Weber syndrome was discovered. Researchers now understand the cause of both Sturge-Weber syundrome and Port Wine birthmarks, and are investigating the optimal studies for treatments. Mission Statement: The Sturge-Weber Foundation’s (The SWF) international mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions through collaborative education, advocacy, research and friendly support.