The Sturge-Weber Foundation (SWF) was founded by Kirk and Karen Ball. They began searching for answers after their daughter 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 SWF Objectives are:

• 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 Month of Awareness   May 2007