Bethesda man bikes, runs across the country to raise money for rare disease

Going the distance

Bethesda’s Al DeCesaris has biked across the country and run from Maine to Florida in his quest to raise money for research into his niece’s rare disease

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DeCesaris (in sunglasses), his parents and a group of high school students at the finish of his East Coast run. Photo by Julie Marshall

Comi said Jenna needed eye surgery for her glaucoma almost immediately to prevent further nerve damage, and her parents were given instructions on how to administer medication to stop a seizure. Shortly after she turned 2, Jenna had her first seizure while the family was on vacation in Ocean City. “We realized nobody knew anything about Sturge-Weber syndrome,” Heck says of that visit to the emergency room. “Thank God our neurologist is [available] 24-7.”

Jenna’s illness brought the tight-knit family even closer together. Ida says she and Ed felt for the first time that they needed to rely on Ida’s parents and three brothers to help care for their two older daughters, Kaitlyn and Julia, who were 8 and 6 when Jenna was born, and their son, Kyle, who was just a toddler.

“Those first few years were really [full of] fear and uncertainty,” says DeCesaris, who was 31 when Jenna was born. The glaucoma left Jenna legally blind in one eye, and in addition to the seizures, she sometimes experiences strokelike episodes that cause temporary numbness on one side of her body, severe migraines that can last for days, and side effects from her medications, including weight gain and dehydration. Even during her many good days, her family worries about when the next episode will strike.

The family learned soon after Jenna’s diagnosis that Comi was struggling to secure financial support for her research into Sturge-Weber, competing for grants with researchers studying thousands of other rare diseases. By the time Jenna became her patient, Comi wasn’t sure she’d have the funding to continue her work.

The adult siblings had an idea: What if the family raised money to support Comi’s work? Heck and DeCesaris took the lead and organized “Bands on the Bay,” a one-day concert held near Annapolis in the fall of 2006. That initial event, featuring local musical acts, brought in nearly $140,000 for Sturge-Weber research.

Since then, the family has continued to host annual Bands on the Bay events, raising hundreds of thousands of dollars more to support Sturge-Weber syndrome research and increase awareness. Heck credits DeCesaris with being a driving force behind the efforts. “When Jenna was first born, Al was the first person to say we need to do a fundraiser,” she says. “He and I did that side by side together.”

Five years ago, DeCesaris—pictured in Fort
Lauderdale—ran from Maine to the Florida Keys. Photo by Shawn Vernon

In 2013, DeCesaris was single, approaching 40 and not thrilled with his career. He had graduated from the University of Delaware in 1995 and managed a bar and restaurant owned by his family in Newark, Delaware, for several years before leaving to attend the Loyola University New Orleans College of Law. Law degree in hand, he returned to Maryland, clerking for a circuit court judge in Prince George’s County and then “bouncing around” in a few legal jobs and running his own real estate title company.

“He owned a business and he was running it and it was successful, but he was miserable,” says Bob Stanger, an insurance agent in Anne Arundel County and one of DeCesaris’ best friends since junior high. Stanger serves on the board of the Celebrate Hope Foundation, which the DeCesaris and Heck families founded to coordinate their fundraising and awareness efforts. “Something was missing, and he needed to do something…he’s the kind of person that needs to do something that brings him joy and he’s passionate about.”

That spring, DeCesaris moved from Maryland to Southern California, where he lived with a cousin in Redondo Beach, just outside Los Angeles. “I was trying, I guess, to find myself,” he says.

He called Stanger, who at the time was competing in triathlons. “What do you know about bikes? I need to learn about bikes,” DeCesaris said. Then he shared his plan to cycle from coast to coast to raise money for the family foundation.

“I remember saying to him, ‘I’ve never even seen you on a bike—do you even know how to ride a bike?’ ” Stanger says. “I didn’t try to talk him out of it, but I remember thinking he’s nuts; he has no clue.”

DeCesaris’ sister, supportive but skeptical, suggested he begin training before they approached potential donors or sponsors. He didn’t own a bicycle, so he rode a stationary bike at the gym for hours at a time. A few weeks before his scheduled departure, DeCesaris finally bought a bike. “I had no idea what I was getting into,” he recalls. “Ignorance is bliss—I was definitely in over my head.”

On a sunny September morning on the Santa Monica Pier, he hopped onto his bike—loaded with two panniers carrying all his gear—and began pedaling east. Although he and his sister had planned a route, they spoke on the phone daily and frequently adjusted his itinerary based on how he was feeling or where she had arranged for him to stay. On five days of his 41-day trip he rode 100 miles or more—including 148 miles across southern Illinois and Indiana. Throughout his journey, he shared the story of Jenna’s illness with small-town media outlets and strangers he met while on the road.

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