|About The Sturge-Weber Foundation|
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 toll free access line, 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.
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.
The Vision of the Sturge-Weber Foundation is that in all areas of life – public, professional, personal – these goals will be achievable for our members.
In Awareness – when the public will be able to see past the disability to the person.
In Empowerment – when families and individuals will be able to obtain the medical care, employment, education, respect and personal achievement they seek
In Research - when the pace of discovery will not be hampered by lack of resources and will lead continually toward a cure and advances in treatment.