Running The Coast For A Cure

An East Coast Run To Create Awareness And Raise Funds For Sturge-Weber Syndrome Research

In September of 2013, Al DeCesaris set out on a solo cross-country bicycle journey in honor of his niece Jenna Heck, who was born with a rare neurological disorder called Sturge-Weber Syndrome (SWS). His Crossing America For A Cure bicycle journey began in Santa Monica, California and concluded 3,088 miles and 45 days later in Ocean City, Maryland. With the support and encouragement of friends new and old, Al created awareness about SWS across the country, raised funds to further the efforts to find a cure, inspired numerous individuals to join the fight, and brought hope to Jenna and countless others suffering with this devastating disorder.

Since 2006, Al, his sister Ida Heck, and their family (now operating as Celebrate Hope Foundation, Inc.), through various charitable events, have raised over $1,000,000 for the cause. 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.

With a cure for SWS now within reach, Al is determined to take on an ambitious new endeavor to create awareness and raise funds for ongoing research. Beginning September 8th, he will run from Lubec, Maine to Key Largo, Florida, passing through 14 states and covering roughly 2,000 miles. Yet, to make his Running The Coast For A Cure charity run a success, help is needed. Support the cause by becoming a Run Partner, sponsoring the endeavor, or making a donation. Your support will greatly improve the lives of those suffering with SWS and further the efforts to find a cure.