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. We support them with collaborative education and advocacy in tandem with translational research as we promote effective management and awareness.

The Sturge-Weber Foundation (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.

• To empower individuals with SWS, KT and PWS and their families
• To support and refer those affected by SWS, KT and PWS
• To act as a clearinghouse of information on SWS, KT and PWS
• To educate the general public, the medical profession, and government agencies by disseminating information about SWS, KT and PWS
• To facilitate further research on SWS, KT and PWS

SWF's Accomplishments:

• Establish first international SWS family registry - 1987
• Karen Ball, founder of SWF, receives the Betty Ford Award - 1990
• Establish SWF-United Kingdom - 1990
• Initiate chromosome analysis study - Denver, CO, 1991
• Establish first SWS clinic in the USA - Denver, CO, 1991
• SWF Medical Advisors publish first SWS Protocol - 1991
• Establish SWF-Canada - 1994
• NIH Sturge-Weber Syndrome Consensus symposium - June 1999
• Publication of first textbook in 40 years on SWS - June 1999
• Publication of first comprehensive SWS Resource Guide - 2003
• Produce Medical CD on SWS - 2003
• Aided in the establishment of the Sturge-Weber Syndrome Clinical Center of Excellence at Johns Hopkins Hospital - 2003
• Assisted in the formation of the Association Sturge-Weber France - 2004
• SWF Partners garner national publicity on the Early Show, the Maury Povich Show and the Discovery Channel - 2004
• SWF Centers of Excellence established at 12 medical institutions in USA and Europe - 2006
• Angiogenesis in the Nervous System Workshop at NINDS co-hosted by the SWF - 2006
• Sturge-Weber Awareness Month expands from Week of Awareness May - 2007
• Biology of Vascular Malformations Workshop (Cohosted with NINDS) - 2007
• Produced educational flash drive - 2007
• International Conference, Anaheim, CA  -2007
• Produced Someone Special Booklet for children - 2008
• Produced Teen Guide to Sturge-Weber syndrome - 2009
• Northeast Regional Conference, Florham Park, NJ - 2009
• Awarded ORDR Brain Vascular Malformation Consortium Grant - 2009
• Regional Education Day, Philadelphia, PA - 2010
• Regional Education Day, Tucson, AZ - 2010
• 2nd edition of Sturge-Weber Syndrome Textbook published - 2010
• International Conference, Orlando, FL - 2011

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.