South River Source | Mitchelle Stephenson | July 25, 2013
Al DeCesaris, Jr. plans to ride his bicycle from Santa Monica, Calif., to Ocean City Maryland. That’s right — from sea to shining sea. He’s doing it for his niece, Jenna Heck, a Davidsonville tween with Sturge-Weber Syndrome (SWS), a devastating neurological disorder. The purpose of the ride is to raise awareness and funds to find a cure.
DeCesaris and his sister, Ida Heck, Jenna’s mom, have set up a Facebook page that you can like, Crossing America For A Cure.
The ride is a fundraiser hosted by the Celebrate Hope Foundation, Inc., to benefit the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute in Baltimore. The center is a state of the art medical facility dedicated to the diagnosis, research, and treatment of Sturge-Weber Syndrome.
DeCesaris’ journey will begin on Sept. 8 and end around six weeks later. Crossing America for a Cure will keep an updated website and blogs so that the public can track the progress, read posts and view photos and video.
Support the cause by making a tax-deductible donation to the Celebrate Hope Foundation, Inc.
About Sturge-Weber Syndrome
SWS is a congenital disorder readily identified by a port wine birthmark that presents on the face of those affected. SWS causes blood vessel abnormalities in the brain, skin and eyes. These abnormalities can cause countless health complications, not all of which are known or understood. Thee can include seizures and glaucoma.
DeCesaris said that most babies born with SWS experience their first seizure within their first 12 months. The seizures are unpredictable and vary in length and severity, and can lead to strokes, intellectual disabilities, developmental delays, migraines, vision impairment, paralysis, and even death.
Jenna and others affected by SWS receive care and treatment at the nationally-recognized Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute. Since Jenna’s birth, the DeCesaris and Heck families, through various philanthropic endeavors including the wildly successful concert and auction fundraiser, Bands on the Bay, have raised over $1 million for the Center and united thousands of people in the fight against SWS. These funds have directly supported the development of new strategies to reduce brain injury and other adverse effects of the disorder, provided treatment for patients without medical insurance, and most recently funded the research that led to the discovery of the cause of SWS.
Despite the amazing accomplishments made thus far, critical support is needed now more than ever to help find a cure. Please join the fight against SWS by following the bicycle journey across the U.S.A. and by making a tax-deductible donation to the Celebrate Hope Foundation, Inc. Your generous support will greatly improve the lives of countless SWS patients like Jenna Heck and help find a cure to this devastating, neurological disorder.
DeCesaris said that he is “inspired by the strength and determination of his playful and enrgetic nine-year-old niece.”
We’ll keep you updated on DeCesaris’ progress as the journey gets underway.
