EB Research Partnership’s 9th Annual ACTion for Jackson took place on Thursday in New York. Pearl Jam frontman Eddie Vedder and his wife Jill attended as part of the event committee, as they are founders of the EB Research Partnership.
Jill Vedder wrote on Instagram, “Thank you to everyone who supported us tonight on our mission to #healeb .. and a very special thanks to the researchers and geneticists who work tirelessly to save the lives of those affected with this horrific disease #denver #columbia #stanford #minnesota #australia .. tonight we raised 1.4 million dollars .. we will cure EB .. it is within our reach .. and none of this could be done without the generous support of those who stand with us .. incredible night? to learn more go to ebresearch.org.”
“Such a honor to meet Chris and Alyssa from #SpecialBooksBySpecialKids .. Chris is an inspiration and a kind soul.. if you don’t follow him on insta you should .. he brings love and awareness to incredible kids ❤️??❤️ thank you Chris and Alyssa for all you do and spending some time with our EB kids.”
Eddie Vedder was photographed with a little girl named Rowan who suffers from EB. The EB Research Partnership is the largest nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa, a group of devastating and life-threatening skin disorders that affect children from birth.
EBRP works to treat and cure EB as quickly and efficiently as possible, fulfilling our mission through partnerships with non-profit and for-profit organizations, foundations, individual donors, and the EB and research communities.
Leading researchers say treatments and a cure for EB are within reach. Though we have made significant progress, we need much greater resources in our pursuit of a cure.
