ESPN's Scott Van Pelt to Host 2nd Annual Change for Charley on March 9 in Chicago
03/01/2019 | 09:31am EDT
CHICAGO, March 01, 2019 (GLOBE NEWSWIRE) -- EB Research Partnership (EBRP), the largest nonprofit dedicated to funding research aimed at treating and ultimately curing the devastating and life-threatening skin disease Epidermolysis Bullosa (EB), is proud to announce the 2nd Annual Change for Charley gala, taking place on Saturday March 9, 2019 in Chicago at 7:00pm. Change for Charley, this year held at Artifact Events, is an inspiring event featuring an exclusive auction, food and cocktails, and live entertainment all to support life-saving research for EB.
The evening is emceed by ESPN Sportscenter host Scott Van Pelt and has featured acts DJ White Shadow and violinist and DJ Kat V, back again this year. In 2017 the event raised nearly $320,000 for EB Research Partnership in its inaugural year. Change for Charley is hosted by Brooke and Michael Kauf in honor of their 6 year old daughter Charley who lives with EB.
“No child should have to endure the pain that Charley deals with on a daily basis. Our mission is to raise as much money as possible to support research that will help find a cure for Charley and the thousands of others that suffer from this horrible genetic disorder”, said Brooke and Michael Kauf.
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. EBRP was founded by a dedicated group of parents as well as Jill and Ed Vedder, lead singer of Pearl Jam, who was born in the Chicago suburb of Evanston.
“Now is a critical moment in time, we have reached the threshold of a far more promising future for children born with EB. Leading researchers believe that both life-changing treatments and a cure are within reach. For an urgent and bold goal such as curing a rare disease like EB, we need to unite the research, medical, patient, and philanthropic communities to drive meaningful and lasting change. Change for Charley is part of the team standing with us to turn the possibility of curing EB into a reality.“, said Michael Hund, Executive Director of EB Research Partnership.
“You find out what EB is, and the reality sinks in that this isn’t something you deal with for just a short time. Change for Charley is about making an end date for this condition”, said Scott Van Pelt.
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.