The Weekly Sentinel | Volume 10, Issue No. 40 | October 3, 2014
A Maryland man running on foot from Lubec, Maine to Key Largo, Florida passed through southern Maine last week in a quest to raise public awareness and funds for the fight against Sturge-Weber Syndrome (SWS). Al DeCesaris began running on September 8 in Lubec, logging about 20 miles each day. On September 22 and 23, DeCesaris ran through Kennebunk, Wells, North Berwick and South Berwick.
DeCesaris’ final destination is Key Largo, Florida, which he hopes to reach in mid December after running through 14 states. The total run will be about 2,000 miles.
DeCesaris made an overnight stop at Angel of the Berwicks Bed & Breakfast. “I couldn’t have picked a better town to stop in,” said DeCesaris. “And the hospitality at Angel of the Berwicks was second to none.”
Since 2006, DeCesaris and his family’ foundation have raised over $1,000,000 for SWS research through various charitable events including Crossing America For A Cure (DeCesaris’ 3,088-mile, 45-day solo cross-country bicycle journey). These funds have directly supported the work of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute and helped fund the very research that led to the discovery of the cause of SWS.
SWS is a rare congenital neurological and skin disorder, affecting approximately 1 in 20,000 births. It is most readily identifiable by a port-wine birthmark on the face of those affected, and is caused by the development of abnormal blood vessels in the skin, eyes, and on the surface of the brain. These abnormal blood vessels cause a number of health complications including port-wine birthmarks, glaucoma, and seizures, and often lead to strokes and stroke-like episodes, impaired motor coordination, paralysis, developmental delays, learning disabilities, mental retardation, migraines, mood and behavior problems, and even death.
People can follow DeCesaris’ Running The Coast For A Cure charity run and support the cause by becoming a Run Partner, a sponsor, or by making a donation at RunningTheCoastForACure.com
