Selena Gomez Tells Mary's Story of Rare Beauty
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Selena Gomez joined us at Venture into Cures to help tell the story of Mary Haddad, a young woman living with Epidermolysis Bullosa (EB).
"Mary is so much more than the rare disease. Mary is a rare human, who can teach every one of us how to embrace positivity and light" says Selena. Mary has faced many challenges brought on by EB, from countless blisters and wounds to even having to amputate her leg due to cancer. Despite these struggles, Mary chooses to see the beauty in her uniqueness.
We’re so thankful for Selena for helping us raise $11M over the last 4 years of Venture into Cures to fund research and accelerate treatments and cures for EB. Estimated to affect 500,000 around the world, EB is a group of rare, life-threatening skin diseases marked by fragile skin that easily breaks and blisters. The skin is so fragile that even gentle rubbing or accidental pressure can cause it to tear. For this reason, children with EB are sometimes called “butterfly” children, because their skin is as fragile as a butterfly’s wings.
EBRP was co-founded by a group of parents dedicated to savings their kids’ lives, along with Jill and Eddie Vedder, and is the largest global organization supporting research for EB. Since its foundation, EBRP has raised +$60M, funded more than 140 projects, and increased clinical research for EB by nearly 20 times, including 2 FDA-approved EB treatments.
"Mary is so much more than the rare disease. Mary is a rare human, who can teach every one of us how to embrace positivity and light" says Selena. Mary has faced many challenges brought on by EB, from countless blisters and wounds to even having to amputate her leg due to cancer. Despite these struggles, Mary chooses to see the beauty in her uniqueness.
We’re so thankful for Selena for helping us raise $11M over the last 4 years of Venture into Cures to fund research and accelerate treatments and cures for EB. Estimated to affect 500,000 around the world, EB is a group of rare, life-threatening skin diseases marked by fragile skin that easily breaks and blisters. The skin is so fragile that even gentle rubbing or accidental pressure can cause it to tear. For this reason, children with EB are sometimes called “butterfly” children, because their skin is as fragile as a butterfly’s wings.
EBRP was co-founded by a group of parents dedicated to savings their kids’ lives, along with Jill and Eddie Vedder, and is the largest global organization supporting research for EB. Since its foundation, EBRP has raised +$60M, funded more than 140 projects, and increased clinical research for EB by nearly 20 times, including 2 FDA-approved EB treatments.
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