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About The Sturge-Weber Foundation |
 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.
Click Here to Meet the Foundation (Anaheim video)
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 Week of Awareness May 2007
- Biology of Vascular Malformations Workshop (Cohosted with NINDS) 2007
The SWF Mission Statement
The Sturge-Weber Foundation (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.
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