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Named after 9-year-old Elodie Kubik, who lives with a severe form of EB, the Plunge began as a local effort in Wellesley, Massachusetts, organized by childhood friends of Elodie’s mom. They wanted to do more for the family than just offer emotional support, and as they learned about EB and the larger rare disease community, […] 
When the San Diego Padres and Seattle Mariners face off again this season, more than division standings are on the line. Teaming up again to join forces with rock icon Eddie Vedder, the Vedder Cup is officially back, transforming a long-standing fan nickname into a spirited West Coast rivalry with purpose. Named in honor of […] |
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The fifth annual Grateful for Graham 5K Run/Walk will take place on May 2nd. Graham Robertello is a 6 year old boy and local superhero who was born with EB. All proceeds raised will go directly to EBRP to help accelerate treatments and find a cure for EB! The event will be a 5K "out […] |
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