Epidermolysis Bullosa Research Partnership Announces Ambassadorship On “Rare Disease Day” at Press ConferenceFor Ortiz’s Fight This Saturday Night Live on SHOWTIME®at Barclays Center in Brooklyn
Cuban heavyweight contender Luis Ortiz has long chronicled his daughter Lismercedes and her battle with the skin condition epidermolysis bullosa (EB). On Thursday, Ortiz was named an honorary ambassador for the EB community by the EB Research Partnership, a global non-profit founded by Eddie Vedder of Pearl Jam and his wife Jill, along with a dedicated group of parents. Thursday’s announcement came on “Rare Disease Day”, which is dedicated to raising awareness and improving access to to treatment and medical representation for individuals with rare diseases and their families.
Ortiz was presented with the honor at the press conference for his fight against Christian Hammer this Saturday live on SHOWTIME from Barclays Center in Brooklyn.
“I’m totally speechless and honored to receive this recognition,” said Ortiz. “It means so much to have this platform to help the parents and children who are suffering from this disease and don’t have an answer or don’t have a way of getting an answer. I’m very proud to not only be able to help my daughter, but someone else’s son or daughter.” A life-threatening genetic skin disease, it is estimated that 500,000 people worldwide have EB. Children with EB are called “Butterfly Children” because their skin is as fragile as the wings of a butterfly: they face severe pain, open wounds, and a grueling bandaging process on a daily basis.
There is currently no treatment or cure for EB, however EBRP is dedicated to changing that as rapidly as possible. “EB Research Partnership is honored to have Luis Ortiz as an EB Ambassador,” said Michael Hund, Executive Director of EB Research Partnership.
“When you have a bold mission to cure a rare disease, we need leaders in our corner like Luis who will fight with us to accelerate treatments and cures for EB. Leading researchers believe that life-saving treatments and a cure are within reach. We are thankful to have Luis as part of the team that will make that vision a reality.”About EB Research Partnership
Founded by a dedicated group of parents and Jill and Ed Vedder (Pearl Jam), EB Research Partnership (EBRP) is the largest 501(c)(3) nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB), a group of devastating and life-threatening skin disorders that affect children from birth. EB Research Partnership works to treat and cure EB as quickly and efficiently as possible and fulfills their mission by partnering with non-profit and for-profit organizations, foundations, individual donors, and the EB and research communities.
EB Research Partnership utilizes an innovative business model of venture philanthropy, when making a grant to a research project they retain the added upside of generating a recurring revenue stream if the therapy or product is commercially successful, then use the return on investment to fund additional EB research until a cure is found. To learn more about EB Research Partnership visit www.ebresearch.org.
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