Friends, family and community members gathered March 15 the Annapolis Waterfront Hotel in Annapolis to celebrate the strides in diagnosis and treatment of those affected by Sturge-Weber syndrome with the premiere of “Hiking Camino De Santiago for a Cure,” a film that chronicled Al DeCesaris’ hike across Spain to raise money and awareness of the disease.
DeCesaris hiked 895.9 kilometers, or nearly 557 miles, from St. Jean Pied-de-Port, France across the Iberian Peninsula to the final point at Cape Finesterre over 31 days focused on raising awareness and funds to battle Sturge-Weber syndrome. He took on the endeavor in honor of his niece, Jenna, who was diagnosed with Sturge-Weber syndrome as a baby and walked each day in honor of a different person living with Sturge-Weber Syndrome. His trip took him through the Spanish provinces of Navarra, La Rioja, Burgos, Palencia, León, Lugo and La Coruña, as well as part of France.
He loaded his backpack with T-shirts, shorts, pants, fleece, socks, underwear, a bath towel, toiletries, Pilgrim’s passport, sleeping bag, survival kit, rain coat and GoPro gear. And on the outside of his pack, he carried water bottles, hiking poles and a scallop shell.
To support Kennedy Krieger Institute’s research and treatment of those affected by Sturge-Weber syndrome, go to www.KennedyKrieger.org/SWS.
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