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Latest News

Sturge-Weber Syndrome Patient Gives Back

Posted Thursday, October 19, 2017 by Al DeCesaris

Sturge-Weber Syndrome patient Paul Siegel gives back by raising funds for Sturge-Weber research On October 19, 2017, Celebrate Hope Foundation,...

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Mom Honors Daughter’s Memory In Beautiful Way

Posted Sunday, October 1, 2017 by CelebrateHopeadmin

Mom honors daughter’s memory in beautiful way by raising funds for Sturge-Weber Syndrome research Recently Al DeCesaris was contacted by...

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SWS Reading Program at Kennedy Krieger

Posted Thursday, March 30, 2017 by CelebrateHopeadmin

Sturge-Weber Syndrome Summer Reading and Medical Program at the Kennedy Krieger Institute This new program is designed to provide individualized...

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The Cause of Sturge-Weber syndrome has been Discovered!

According to Anne Comi, M.D., co-senior author of the research that produced the groundbreaking discovery, Sturge-Weber Syndrome and port-wine birthmarks are caused by a somatic activating mutation in the GNAQ gene which occurs during early pregnancy. Although more research must be done, the study, published (May ’13) in the New England Journal of Medicine, brings researchers closer than ever to a cure.

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