Bay Weekly | Volume XXII, Number 44 | Bob Melamud | October 30, 2014
Millions of people dump ice water on their heads to raise money for ALS. Hundreds of thousands walk for breast cancer. Can one lone person hope to make a difference? Especially fighting a plight out of the limelight?
Annapolis lawyer and St. Mary’s High School graduate Al DeCesaris knows he can.
For the second year in a row, he’s crossing vast distances under his own power to raise money for a condition most of us have never heard of, Sturge-Weber syndrome.
But his family knows all too well about Sturge-Weber. The rare congenital disorder affects one in 50,000 children from birth, causing skin stains, glaucoma and neurological symptoms like convulsions and developmental delays. The condition is random, not hereditary, which means all newborns are equally susceptible.
Ten-year-old Jenna Heck, Al’s niece, is one of the hundred or so of those children born each year in the U.S.
Ground-breaking discoveries about the syndrome have been made, in part, because of Jenna. In 2013 researchers at Kennedy Krieger Institute in Baltimore discovered the gene mutation that causes Sturge-Weber, using funds, in part, raised by DeCesaris.
“Because of the sustained support of the DeCesaris family, we have significantly advanced the diagnosis and treatment of Sturge-Weber syndrome,” Dr. Anne Comi told Bay Weekly. Comi is director of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger, a leader in this research.
DeCesaris made a bigger commitment to Sturge-Weber research than writing a check.
“I wanted Jenna and the other children with Sturge-Weber to know there are people who care about them and their condition,” he said.
Last year he made a solo cross-country bicycle ride from Santa Monica, Calif., to Ocean City. Word spread via social media, and people from many places and many walks of life made pledges from a penny to 30 cents a mile. In Ocean City after 45 days, his odometer registered 3,088 miles, and his pledges totaled $32,500. Retired NFL lineman Alan Faneca, whose daughter has the condition, matched DeCesaris’ pledges. The Greene Turtle restaurant chain added $5,000.
The $75,000 generated by that ride helped Comi advance the fight against Sturge-Weber syndrome.
DeCesaris is on the road again, this time on foot. “I wanted to do something different,” he said.
He started running September 8 from Lubec, Maine, the eastern-most point in the U.S., and will end in Key Largo. He expects the 1,900-mile trip to take 90 days running 20 miles a day, every day, unless there is heavy rain.
“Many of the Sturge-Weber research facilities are located on the East Coast,” he says, “so it seemed like a logical choice.”
Bay Weekly caught up with DeCesaris at mile 770 in Annapolis. That October night was unique in his three months on the road, for he slept in his own bed. Most nights he stays in the homes of supporters.
“We’re getting friends as well as their friends and family to host me for the night in the towns I’m running through,” he said. “They heard about the cause and wanted to help.”
This year’s run will also go to Kennedy Krieger’s Hunter Nelson Sturge-Weber Center, “providing ongoing funding allowing us to study seizure medications for Sturge-Weber syndrome,” Comi says.
On his Annapolis stopover, DeCesaris attended a small reception at the Annapolis Green Turtle with family and friends. A highlight was reporting his progress to Jenna, who’s making progress of her own.
“It’s a serious condition, and a daily struggle,” her uncle explains. “But she’s doing well, mainstreamed in an Anne Arundel County public school and even playing soccer this year.”
Helping make life good for Jenna and other kids with Sturge-Weber is another goal DeCesaris is achieving.
“Al’s event will also raise awareness for Sturge-Weber syndrome,” Comi says, “which will help increase early diagnosis of these children and improve their quality of life.”
By the time you read this story, DeCesaris will be in southern Virginia or North Carolina. Not until early December will he return to Annapolis.
Early next year, the fit 40-year-old will be hatching another long-distance effort for Jenna.