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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Grand-Canyon2
The Difference Makers Global Community, founded by DeCesaris, completed its first trip—a 24-mile Grand Canyon hike—in June. Photo courtesy of Al DeCesaris

In central Missouri, he narrowly avoided serious injury when he was tossed off his bike after he hit a rumble strip. The crash was one of the worst moments of his trip, but just a few days later came one of the high points. DeCesaris was in Missouri because the parents of a child with Sturge-Weber had heard about his trip and told his sister they wanted to meet him. Since they lived in St. Louis, about 400 miles north of his planned route, he had changed his plans to meet the family. “This went from my adventure for Jenna to something bigger. It was profound,” he says. “I was pedaling for them. I wasn’t just pedaling for Jenna.”

A little over six weeks and 3,088 miles after leaving Santa Monica, DeCesaris rolled into Ocean City, Maryland, having raised nearly $80,000.

DeCesaris’ successful completion of the cross-country bike ride sparked a passion for fundraising through extreme adventure that guides his life today—often at a physical cost. In the Grand Canyon in June, he became severely dehydrated and relied on the medical expertise of a physician in his group who helped him finish the hike. During his nearly 2,000-mile run along the East Coast, he had “a blister on his toe that was bigger than his toe,” according to Stanger, and shin splints that caused him excruciating pain. Just a couple of weeks into that trip, near the Maine-New Hampshire border, he called his parents. He was beginning to question if he’d be able to continue. His father handed the phone to Elizabeth Medlock, the mother of a young girl with Sturge-Weber who was staying with DeCesaris’ parents while in town from Florida for an appointment with Comi. “You better not quit!” DeCesaris recalls Medlock telling him.

“He’s met a lot of families who had no connections with other people [with Sturge-Weber] and it inspired them personally,” Rose Mary DeCesaris says. “He’s inspired all of us to do a little more and try to do better.”

Ride---Ida-Heck,-Jenna-Heck-&-Al
DeCesaris with his older sister, Ida, and niece Jenna. Photo courtesy of Al DeCesaris

Around the same time DeCesaris began training for his cross-country cycling trip, Comi and her collaborators were preparing to publish groundbreaking research. They had discovered a genetic mutation that causes Sturge-Weber syndrome. While a major development, the breakthrough didn’t immediately lead to a cure or any new treatments. Comi and her colleagues are now conducting trials of several medications that may help prevent symptoms or even reverse some of the damage caused by Sturge-Weber—research that may not have been possible without the funds raised by the DeCesaris and Heck families.

“All of the things that we’ve accomplished, in terms of advancements in treatment, understanding the mutation, the center itself and all the patients it’s cared for, my career—all of those things that we’ve done may not have been possible if they had not stepped up to support the work,” Comi says.

On the Billy Goat Trail, DeCesaris stops suddenly, looking concerned. It’s not that he’s gone the wrong way; a spider has spun a web across the path.

“Ooh, look at this. I hate spiders,” he says. He gingerly pulls a strand of web off his arm. It’s clear that he is still adapting to his life as an adventure-seeking outdoorsman. “Sorry, buddy, but we have to go around you,” he says to the arachnid before continuing on.

Six years after DeCesaris’ first fund-raising adventure, Jenna is now 15. She takes about 15 pills daily, including three high-dose anti-seizure medications. A freshman at The Harbour School in Annapolis, she struggles with reading but can comprehend at her normal grade level. In other ways, her mother says, Jenna is a “typical teen.” She loves when her “crazy” Uncle Al, as Jenna sometimes calls him, takes her to lunch and the movies, preferring films featuring Spider-Man or other comic book heroes.

While DeCesaris still may not fully understand the genetics and physiology of Jenna’s illness, the last 15 years have taught him about the rewards of activism and fundraising—and about himself.

Last year, he moved from the Annapolis area to Bethesda and took a job as a resource development director for the Salvation Army National Capital & Virginia Division, where he says he’s learning more about traditional fundraising while also bringing a different perspective to an organization with 150 years of history and tradition.

Knowing that his actions have inspired others helps DeCesaris cope with the fact that he owes the discovery of his passion to the challenges that Jenna and her parents have had to face every day. “My niece’s struggles, her suffering…it sucks that this is her burden she has to carry throughout her life,” he says. “There might be a cure one day, but it’s not going to reverse some of the damage that’s been done to her brain. But as awful as that is, she’s made me a better person. My whole family, we’re all better human beings as a result.”

Michael S. Gerber is a writer and consultant in Washington, D.C.

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