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.