NEW YORK, Nov. 07, 2019 (GLOBE NEWSWIRE) -- EB Research Partnership (EBRP), the largest 501(c)(3) nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB), announced today a new $3 million gift from the Ann and Ari Deshe Family. The family will be honored for their leadership at the 10th Annual ACTion for Jackson benefit on the evening of November 7 at the Mandarin Oriental Hotel. Thanks to their support, the event will be the largest EB fundraiser in history with more than $4 million expected to be raised.

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.

“When the Deshe family selected EBRP as their partner, it changed the trajectory of this organization and, more importantly, the ability to move EB therapies and potential cures closer to reality. We are incredibly grateful for their generosity and deep personal involvement in helping those who live with EB,” said Alexander Silver, Co-Founder and Chairman of EBRP.

For the Deshe Family, the mission is clear, “We would love to see this disease gone, and we want to be a part of helping eradicate it—forever.” Ari Deshe, the founder and chairman of Safe Auto Insurance Co., was born with EB Simplex, as were three of his children. Ari and his family, including his wife, Ann, and their children Elie, David, Dara and Daniel, together with their spouses have decided to take an active role in making the mission to find a cure for EB a reality. As key leaders and supporters of EBRP, the Deshe’s have already generously donated millions of dollars dedicated to funding research for innovative breakthrough treatments and ultimately a cure for all forms of EB.  Their support has lead to research that has transformed the lives of  people living with EB patients. When they began supporting in 2015 there were only 2 clinical trials in EB. Today, there are more than 20 and the possibility of curing this devastating and life-threatening disease is within reach.

​Their giving has funded medical advancements at leading global institutions where scientific research teams are pioneering new treatments and progressing toward an eventual cure for EB. Their support is accelerating life-saving research from university labs into clinical trials, thereby shortening the timeframe to commercialization and providing vital help to people who suffer from EB. The Deshe Family selected EBRP after an extensive search.

Learn more at ebresearch.org

Contact:
EB Research Partnership
Michael Hund, +1-646-844-0902
mhund@ebresearch.org

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. EBRP 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.

EBRP 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.