Press

What it means to meet Mikey

What it means to meet Mikey

April 27, 2016 Written by: Eleanor Dehoney, EB Research Partnership Board Member You know those really good people, the ones who are determined to make the world a better place?  I’m not one of those.  I live in the Nation’s Capital – a beehive for the cause-oriented – so I know a really good person

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Help for ‘butterfly children’ in sight, thanks to rockers who care

Help for ‘butterfly children’ in sight, thanks to rockers who care

January 4, 2016: Nine-year-old Mikey Fullmer is bandaged from his toes to his thighs and from his shoulders to the tips of his fingers. His skin is so fragile, even a gentle hug can cause a life-threatening wound. Mikey has epidermolysis bullosa, a rare connective tissue disease that affects not only his skin, but his eyes,

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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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