Celebrate Hope Foundation, Inc. was created by the DeCesaris and Heck families following the birth of Jenna Heck, who was diagnosed with a rare congenital neurological disorder called Sturge-Weber Syndrome.
Celebrate Hope Foundation, Inc. (Tax ID #46-2311281) is an IRS registered 501(c)(3) nonprofit charitable organization dedicated to improving the quality of life of those affected by Sturge-Weber Syndrome and port-wine birthmarks. Its mission is to raise awareness and raise for Sturge-Weber research and further the efforts to find a cure.
Since its inception, Celebrate Hope Foundation, Inc. has hosted a number of charitable events and athletic endeavors including Bands on the Bay, Crossing America For A Cure, and Running The Coast For A Cure and has raised over 1.25 million dollars for Sturge-Weber research. This money has directly supported the work of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute and helped fund research that led to the ground-breaking discovery of the cause of Sturge-Weber Syndrome.