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The Dispatch/Maryland Coast Dispatch
October 25, 2013
Man Completes 3,000-Mile Bike Journey In OC
By JOANNE SHRINER
STAFF WRITER
OCEAN CITY – Al DeCesaris Jr. finished a 3,000-mile journey across the United States in Ocean City on Tuesday all in the name of his niece and others who suffer from SturgeWeber Syndrome (SWS). Crossing America For A Cure is a fundraiser hosted by the Celebrate Hope Foundation Inc., which is a nonprofit charitable organization. DeCesaris and his sister, Ida Heck, from Annapolis, created the fundraiser in honor of Ida’s daughter, Jenna, 9, who was born with SWS, a devastating neurological disorder. SWS is a congenital, neurological disorder most readily identifiable by a port wine birthmark that presents on the face of those affected, and causes blood vessel abnormalities in the brain, skin and eyes. These abnormalities cause countless health complications that include seizures and glaucoma. Seizures are unpredictable and vary in length and severity and can lead to strokes, mental retardation, developmental delays, learning disabilities, migraines, vision impairment, paralysis and even death. Jenna and others affected by SWS receive care and treatment at the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute, an internationally recognized institution dedicated to the diagnosis,
Al DeCesaris Jr. was joined at the finish line at the Original Greene Turtle on 116th Street by his sister, Ida, her daughter, Jenna, who has SWS, and the Hastings family of Millsboro, Del., whose daughter, Stella, also has SWS.
Photo by Joanne Shriner
research, and treatment of SWS. Eight years ago, the DeCesaris and Heck families started a concert and auction fundraiser called Bands on the Bay that has raised over $1 million for the Hunter Nelson Sturge-Weber Center. These funds directly support the development of new strategies to reduce brain injury and other adverse effects of the disorder, provided treatment for patients without medical insurance and most recently funded the research that led to the discovery of the cause of SWS. “Last year, my sister and I got to
talking how we needed to create awareness in different parts of the country, branch out and spread the word in different areas. So, we started brainstorming and the next thing we know the idea was for me to be on a bike spreading the word all across America, and that’s what we did,” DeCesaris said. With no experience in cycling, DeCesaris began training for his journey only three weeks before he left on Sept. 8 for a 45-day trip traveling 3,000 miles across 13 states starting in Santa Monica, Calif., ending in Ocean City.
In partnership with his sister, Heck would map out his route every night looking for the easiest routes with the least amount of elevation and best biking conditions. DeCesaris biked an average of 80 miles a day solo. He became part of the Warm Showers Community that is a free worldwide hospitality exchange for touring cyclists with people who are willing to host touring cyclists and have them stay with them. DeCesaris biked 41 days out of the 45-day trip as he took a few days off to visit other children suffering from SWS. Along the way, he stopped at the St. Louis Children’s Hospital where he met Page McGrady and Lynn Ray, two children suffering from SWS. In Pittsburgh, DeCesaris met former NFL Steelers pro-bowler Alan Faneca, whose daughter, Anabelle, suffers from SWS. Once hearing DeCesaris’ story, Faneca committed to matching all the funds raised along the way. Also, a couple of days ago on his way to Ocean City he stopped in Sussex County, Del., where he met the Hastings family and their daughter, Stella, who has been diagnosed with SWS. “The highlight was just a few days ago when I stopped at Jenna’s elementary school and got to see the look on her face when I rode up on my bike with all of her friends and classmates standing at her side,” he said. SEE NEXT PAGE
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