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Our Mission and Vision

For the SWF 2021-2022 Fiscal Year, the Foundation is focusing on The JOURNEY | Navigating Life Together.

Living with Sturge-Weber syndrome is a life long journey, not only for the patient, but for the caregivers - that includes mothers, fathers, grandparents, siblings, even neighbors and friends.

This year, SWF will focus on a variety of important topics that patients and families have shared with us:

  • Mental Health for the Patient and the Caregiver
  • Navigating from pediatrics to adulthood
  • Planning for a Secure Financial Future
  • How to Navigate COVID-19

and many more.

SWF has many exciting opportunities coming in 2022, including the International Family Conference which was cancelled in 2020, due to COVID-19.  Stay tuned and visit our site frequently for details on the conference and many other programs and events we plan to offer!

 

 

 

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 (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.