Quoddy Tides | J.D. Rule | Sept. 12, 2014
Al DeCesaris is a dedicated man. He pulled out of Lubec on September 8 and expects to reach Key Largo, Fla., in 90 days. Ninety day of running, that is, for approximately 2,000 miles. He has already crossed the continent by bicycle, all to draw public awareness to Sturge-Weber Syndrome (SWS) and to honor his 10-year-old niece, Jenna Heck, who was born with the neurological disorder.
SWS, also known by its formal name encephelotrigeminal angiomatosis, according to the Sturge-Weber Foundation’s website, is congenital and usually includes “port wine” facial birthmarks, as well as seizures and glaucoma, and can often lead to strokes. SWS is a rare congenital neurological and skin disorder that affects roughly one in 20,000 births.
Since 2006, DeCesaris, his sister Ida Heck, and their family, now operating as Celebrate Hope Foundation Inc., have raised over $1,000,000 for SWS research. These funds have directly supported the work of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute and helped fund the research that led to the discovery of the cause of SWS.
Why Lubec? “I wanted the farthest north point that’s on the ocean,” DeCesaris said. His 10 a.m. departure from the West Quoddy Head Lighthouse was cheered by Lubec Select Board Chair Carol Dennison, Rep. Katherine Cassidy and Bay of Fundy International Marathon committee members John Hough and Rachel Rubeor. He has made arrangements to be picked up each evening and taken to nearby lodging, then returned the next morning to the same spot to continue his journey, which can be followed on his Facebook page. “I packed three pair of shoes,” he says. “and expect to buy more on the way.”
People can follow DeCesaris’ Running The Coast For A Cure charity run and support the cause by either sponsoring the endeavor or making a donation at www.RunningTheCoastForACure.com
