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Kennedy Krieger Institute celebrates film helping to cure Sturge-Weber syndrome

From left, Dr. Anne Comi, director of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute; Ida Heck, founder of Celebrate Hope; Al DeCesaris, author, speaker and advocate with Celebrate Hope Foundation; and Dr. Gary Goldstein, president and CEO of Kennedy Krieger Institute, celebrated Al’s hike across El Camino de Santiago in Spain while garnering the community’s support for Al’s next journey as he seeks to continue raising funds for Sturge-Weber syndrome through his foundation, Celebrate Hope. (Photo courtesy of Kennedy Krieger Institute)

From left, Dr. Anne Comi, director of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute; Ida Heck, founder of Celebrate Hope; Al DeCesaris, author, speaker and advocate with Celebrate Hope Foundation; and Dr. Gary Goldstein, president and CEO of Kennedy Krieger Institute, celebrated Al’s hike across El Camino de Santiago in Spain while garnering the community’s support for Al’s next journey as he seeks to continue raising funds for Sturge-Weber syndrome through his foundation, Celebrate Hope. (Photo courtesy of Kennedy Krieger Institute)

Paul Siegel, left, who was diagnosed with Sturge-Weber syndrome takes gets a photo with Al DeCesaris from the Celebrate Hope Foundation during the premiere of Al DeCesaris’ film, “Hiking Camino De Santiago for a Cure.” The pair had worked together in the past to raise funds for Sturge-Weber Syndrome. (Photo courtesy of Kennedy Krieger Institute)

Paul Siegel, left, who was diagnosed with Sturge-Weber syndrome takes gets a photo with Al DeCesaris from the Celebrate Hope Foundation during the premiere of Al DeCesaris’ film, “Hiking Camino De Santiago for a Cure.” The pair had worked together in the past to raise funds for Sturge-Weber Syndrome. (Photo courtesy of Kennedy Krieger Institute)

From left, Mia DeCesaris; Joe DeCesaris; Mary Ostrowski; Ed Heck; Al DeCesaris; Dr. Anne Comi, director of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute; Julia Heck; Ida Heck; Jenna Heck; Michael DeCesaris; Albert DeCesaris; Rose Mary DeCesaris; and Kyle Heck gather for a group photo at the Annapolis Waterfront Hotel in Annapolis during the premiere of Al DeCesaris’ film, “Hiking Camino De Santiago for a Cure.” (Photo courtesy of Kennedy Krieger Institute)

From left, Mia DeCesaris; Joe DeCesaris; Mary Ostrowski; Ed Heck; Al DeCesaris; Dr. Anne Comi, director of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute; Julia Heck; Ida Heck; Jenna Heck; Michael DeCesaris; Albert DeCesaris; Rose Mary DeCesaris; and Kyle Heck gather for a group photo at the Annapolis Waterfront Hotel in Annapolis during the premiere of Al DeCesaris’ film, “Hiking Camino De Santiago for a Cure.” (Photo courtesy of Kennedy Krieger Institute)

Al DeCesaris greets guests as they gathered at the Annapolis Waterfront Hotel in Annapolis for the premiere of Al DeCesaris’ film, “Hiking Camino De Santiago for a Cure,” a chronicle of his 31-day journey to raise money and awareness to help fight Sturge-Weber syndrome. (Photo courtesy of Kennedy Krieger Institute)

Al DeCesaris greets guests as they gathered at the Annapolis Waterfront Hotel in Annapolis for the premiere of Al DeCesaris’ film, “Hiking Camino De Santiago for a Cure,” a chronicle of his 31-day journey to raise money and awareness to help fight Sturge-Weber syndrome. (Photo courtesy of Kennedy Krieger Institute)

Ida Heck, founder of Celebrate Hope, and attendees watch Al DeCesaris’ film, “Hiking Camino De Santiago for a Cure,” which chronicles his 31-day hike across Spain to raise awareness and funds for Sturge-Weber Syndrome research. (Photo courtesy of Kennedy Krieger Institute)

Ida Heck, founder of Celebrate Hope, and attendees watch Al DeCesaris’ film, “Hiking Camino De Santiago for a Cure,” which chronicles his 31-day hike across Spain to raise awareness and funds for Sturge-Weber Syndrome research. (Photo courtesy of Kennedy Krieger Institute)

Julia and Jenna Heck share a moment at the Annapolis Waterfront Hotel in Annapolis for the premiere of Al DeCesaris’ film, “Hiking Camino De Santiago for a Cure,” a chronicle of his 31-day journey to raise money and awareness to help fight Sturge-Weber syndrome. Jenna, DeCesaris’ niece was diagnosed with Sturge-Weber syndrome as a baby. (Photo courtesy of Kennedy Krieger Institute)

Julia and Jenna Heck share a moment at the Annapolis Waterfront Hotel in Annapolis for the premiere of Al DeCesaris’ film, “Hiking Camino De Santiago for a Cure,” a chronicle of his 31-day journey to raise money and awareness to help fight Sturge-Weber syndrome. Jenna, DeCesaris’ niece was diagnosed with Sturge-Weber syndrome as a baby. (Photo courtesy of Kennedy Krieger Institute)

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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