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Our campaign is now complete. 8 supporters helped us raise US$1,200.00

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Closed 26/01/2023
raised of US$20,000 target
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Closed on 26/01/2023
RCN 742485813

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Here is a story of how we helped one family: The Champion Family came to Grapevine, TX this past summer to attend the SWF International Conference, in which 150 families and researchers gathered. However, they arrived with two fewer people. Mom and Kayla, their daughter with SWS, were in the hospital to treat seizures and work through what would be a very difficult cluster of seizures. Dad and Kayla's sister was with us learning all they could during this very difficult time. The family divided and conquered as true Warriors do. As always, Dr. Dave Shahani came to the rescue! He and the other doctors in attendance came through and gave them valuable advice on how to handle the situation and provided expert collaboration with Cooks Children's Hospital to get Kayla back on her way.

About the charity

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.

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