Press

Miami’s Deshe family gives $3M to research for rare skin disorder

Miami’s Deshe family gives $3M to research for rare skin disorder

August 19, 2015: The family of a Miami auto insurance magnate on Wednesday announced a $3 million gift to the EB Research Partnership, the nation’s largest nonprofit group working to cure a rare and debilitating disorder that causes the skin to tear apart, blister and shear off, leading to pain, disfigurement and wounds that never

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EB Research Partnership Announces $3 million Gift from Deshe Family

EB Research Partnership Announces $3 million Gift from Deshe Family

August 19, 2015: EB Research Partnership (“EBRP”) – the nation’s largest not-for-profit organization dedicated to curing epidermolysis bullosa (“EB”), a rare and debilitating skin disorder – announced today that it has secured a $3 million individual gift from the Deshe Family, the largest of its kind ever given to an EB-related cause.

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Boy with rare skin disease makes his first BFF

Boy with rare skin disease makes his first BFF

August 14, 2015: Jackson Silver, 7, has epidermolysis bullosa, a painful disease that causes his skin to blister and fall off. He has never liked talking about his illness with friends — until earlier this year. See how he found his first friend who also has EB and how the friendship is helping Jackson wit his condition.

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KNX-AM Radio: Hero of the Week

KNX-AM Radio: Hero of the Week

April 9, 2015: Ali Ringgold, started an art blog in honor of her sister, Bella, who passed away from EB in 2010. In this radio interview, Ali and her Dad, Tim, share their touching story of how and why they are using the blog to raise awareness and money for EB Research. Check out Ali’s

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