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Who We Are

Our Mission and Vision

This year the whole world learned the importance of being united. United is even in the name of our country.  At The Sturge-Weber Foundation, we are lucky enough to work with knowledgeable doctors, clinicians, researchers, scientists, industry, patients, caregivers, and all the support people to make our world of SWS a village.

This year the SWF chose our theme to be Unite.  Why?

1.  Together when we UNITE we have a bigger voice.

2.  Together when we UNITE our workload gets lighter.

3.  Together when we UNITE we learn more and achieve greater results.

4.  The most important why is...

We are stronger because we are UNITED!

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 one on one phone support, 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.

Mission Statement

The Sturge-Weber Foundation's (The SWF) global mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port-Wine Birthmark conditions through tenacious collaboration with clinical partners and pioneers, education, advocacy, research, and friendly support.