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Closed 31/03/2023

Have A Heart for SWF

Sturge-Weber syndrome is a neurological disorder indicated at birth by a port-wine birthmark on the forehead and upper eyelid of one side of the face. The SWF supports patients, caregivers, and researchers, and promotes awareness of SWS.

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Closed 31/03/2023

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We exist 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.

Story

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.

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!

Unite with us to have a heart for Sturge-Weber syndrome. Thank you!

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