Capital Gazette | Wendi Winters | December 28, 2014
Annapolis lawyer Albert “Al” DeCesaris says he’s “an average guy,” but he didn’t pick an average way to raise money for a niece who suffers from a rare medical condition.
On Dec. 9, DeCesaris completed a 93-day, 1,935-mile fundraising run from Lubec, Maine, all the way down the East Coast to Key Largo, Florida.
DeCesaris, 41, ran 86 of the 93 days, hitting 22 miles most days — nearly the equivalent of a daily marathon. The other seven days were for nursing his injuries.
“I’m not an athlete,” he said. “I got everything on this trip: shin splints, plantar fasciitis, pulled muscles — you name it.”
“I went through 10 pairs of shoes,” DeCesaris said.
He has raised slightly more than $30,000 so far.
While he was alone for most of the trip, he often interrupted his run to make appearances at school assemblies, clubs and support groups for Sturge-Weber syndrome.
DeCesaris’ 10-year-old niece, Jenna Heck, was born with the congenital neurological disorder, which is found in about 100 newborns in the United States every year.
For most with Sturge-Weber, the disease is limited to a port wine facial birthmark. But Jenna has severe migraines and cluster seizures, as well as glaucoma in her right eye. She has had to have tubes implanted to reduce pressure in that eye and has undergone surgery for cataracts and retina repair.
Jenna, a fifth-grader at Davidsonville Elementary School, is accompanied to classes by a full-time aide. She has also had multiple laser treatments to reduce the birthmark’s color and its effects.
DeCesaris hopes his fundraising will one day help find a cure for Sturge-Weber.
Last year, he cycled more than 3,088 miles in a 45-day, coast-to-coast ride that began on the Santa Monica pier in California on Sept. 8 and ended in Ocean City on Oct. 22. That ultimately raised more than $50,000.
Involvement in good causes is a DeCesaris family tradition. The Geaton and JoAnn DeCesaris Cancer Institute at Anne Arundel Medical Center in Annapolis is named for the clan’s patriarch, Geaton Anthony DeCesaris Jr., and his widow JoAnn.
One daughter, JoAnn DeCesaris Wellington, and her best friend Beth Prout Lennon have organized the DeCesaris/Prout Cancer Foundation, which raises funds for cancer research through its annual holiday season Jingle Bell 5K run and a golf tournament, now in its 12th year.
Last year Wellington’s husband Daniel biked more than 1,500 miles to raise $27,000 for his wife’s foundation.
Al DeCesaris is a cousin. “I’ve experienced a lot of things the past two years, crossing American by bike, and running the length of the East Coast,” he said. “A lot of people out there were willing to help a person in need.”
“The money we’ve raised goes to research,” he said. “I hope one day it helps my niece.”
To learn more about Sturge-Weber syndrome or to donate, visit www.runningthecoastforacure.com. The funds raised through Al DeCesaris’ efforts or online donations go to the Sturge-Weber Center at Kennedy Krieger Institute, a nonprofit affiliate of Johns Hopkins Hospital, and support research into the disorder.
