We are a nonprofit charitable organization dedicated to improving the quality of life of those affected by Sturge-Weber syndrome and port-wine birthmarks. Our mission is to create awareness and raise funds for Sturge-Weber research and further the efforts to find a cure.
In 2013, the cause of Sturge-Weber syndrome was discovered! Now critical research is being done to help people with SWS live healthy and productive lives. Celebrate Hope Foundation is proud to support Dr. Anne Comi of Kennedy Krieger Institute in achieving these goals.
We at the Celebrate Hope Foundation are here to support individuals and families affected by Sturge-Weber syndrome. As a family resource, please feel free to contact us with any questions you have or to find out how you can become a part of our support community and family.
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The Cause of Sturge-Weber syndrome has been Discovered!
GROUNDBREAKING DISCOVERY OF THE CAUSE OF SWS GIVES PATIENTS HOPE:
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.
