Arundel NewsNetwork | Anna Lucente Hoffmann | May 23, 2016
For one Annapolis man, it wasn’t enough to ride his bike across the country to raise awareness about a rare medical disorder. He’s now traveled coast to coast on foot for the same cause.
Riva resident Al DeCesaris recently finished up a run down the East Coast from Northern Maine to Key Largo, Florida. Is he suffering from the uncommon disease he’s trying to call attention to? No, but his 10-year-old niece Jenna is. She has Sturge-Weber Syndrome, a neurological disorder so atypical that it affects only 1 in every 20,000 people.
DeCesaris says he does this for her, and for others with the illness. “I wanted to do something outside of the box, something that was eye-opening to grab people’s attention. I also wanted to give my niece hope, and give the other children that have Sturge-Weber hope, to let them know that someone is out there fighting for them,” DeCesaris goes on to say.
For the past 10 years, DeCesaris has dedicated his time to fighting the disease. Through his events and his “For A Cure” books, he has helped to raise more than $1,000,000 for medical research for this disorder. Doctors at Kennedy Krieger Institute have recently discovered the cause of Sturge-Weber Syndrome. They’re currently researching a cure.
DeCesaris candidly chronicles his cross-country adventures in his books, including injuries and encounters with wild animals. The “Running The Coast For a Cure” and “Crossing America For A Cure” books by Al DeCesaris are currently available for purchase on Amazon.com, and all profits from the sale of the books goes to Sturge-Weber Syndrome research.