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Our Cause
Our Cause

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. 

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Our News
Just recently, the cause of Sturge-Weber was discovered. And that is just the beginning. Much work is being done to determine how to help those living with Sturge-Weber to learn and live healthy, productive and independent lives. Celebrate Hope Foundation works closely with Dr. Anne Comi from Kennedy Krieger’s Hunter Nelson Sturge-Weber Syndrome Center in Baltimore MD.  News
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Our Community

We at the Celebrate Hope Foundation are here to support those individuals living with Sturge-Weber Syndrome. As a family resource, please contact us with any questions or find out how you can be part of our family.

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featured-videoFeatured Video by Tracy Kovach

What is Sturge-Weber Syndrome?

Sturge-Weber Syndrome is a rare congenital, vascular disease most readily identifiable by a port-wine birthmark on the face of those affected. It causes abnormal blood vessels to develop in the skin, eyes, and brain. The abnormal blood vessels in the skin and eyes can cause port-wine birthmarks and glaucoma. Yet, it’s the abnormal blood vessels on and/or in the brain that pose the greatest threat because they often lead to other health complications, including seizures, strokes, impaired motor coordination, paralysis, developmental delays, learning disabilities, mental retardation, migraines, mood and behavior problems, and even death.

Latest News

Al DeCesaris Hikes Spain for Sturge-Weber Syndrome

Posted Friday, July 14, 2017 by CelebrateHopeadmin

In August Al DeCesaris took on an exciting endeavor in honor of his niece Jenna and all those living with...

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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 for Sturge-Weber is Found!

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 on May 8, 2013 in the New England Journal of Medicine, brings researchers closer than ever to a cure.

We need your help to reach our 2017 fundraising goal of $50,000. Make a donation today!
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