Our Cause – Celebrate Hope Foundation

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 funds 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.

Jenna Heck

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.

Celebrate Hope Foundation

Make a donation today and help those affected by Sturge-Weber Syndrome.

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Summer Reading Program for SWS

This new program is designed to provide individualized reading assessments and neurological assessments for children with SWS and reading impairments. Interventions are coordinated through the summer to optimize progress in reading and neurological status. Donations will help those with SWS attend this program.

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Al DeCesaris Hiked Spain to Raise Awareness

In August 2017, Al DeCesaris hiked across Spain in honor of his niece Jenna to raise awareness and funds for Sturge-Weber Syndrome research. Each day of his 31-day, 555-mile Hiking Camino de Santiago For A Cure journey of hope was dedicated to a different person living with Sturge-Weber Syndrome.

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