University of Delaware Messenger | Volume 23, Number 1 | Artika Casini | April 2015
Al DeCesaris, AS95, has never run a marathon. But on December 9, 2014, he completed a 1,935-mile run in honor of his niece, Jenna Heck, who was born with Sturge-Weber Syndrome (SWS), a rare neurological disorder with no cure.
His “Running the Coast for a Cure” charity run began on Sept. 8 in Lubec, Maine, and concluded 93 days later in Key Largo, Florida.
With the support and encouragement of friends old and new, he created cross-country awareness about the disease, raised funds to further the efforts to find a cure, and brought hope to his niece and countless others.
“I do this for Jenna and other children like her,” DeCesaris says. “It’s a way to let them know that there’s someone out there fighting for them.”
A lawyer by trade, DeCesaris carves out time every year to raise awareness for SWS, a disorder associated with discoloration of the skin, glaucoma, seizures and cerebral malformations.
Last year, he completed a cross-country bicycle journey to raise money and awareness for the disease. Since 2006, he and his family have operated the Celebrate Hope Foundation and have raised more than $1 million for the cause.
“This experience has been incredibly gratifying,” he says. “It is, by far, the most rewarding thing I’ve ever done.”
