NEW YORK, MIAMI and COLUMBUS, Ohio, Aug. 19, 2015 /PRNewswire/ -- EB Research Partnership ("EBRP") – the nation's largest not-for-profit organization dedicated to curing epidermolysis bullosa ("EB"), a rare and debilitating skin disorder – announced today that it has secured a $3 million individual gift from the Deshe Family, the largest of its kind ever given to an EB-related cause.
The gift will go to fund medical advancements aimed at treating and curing EB at leading global institutions such as Stanford University and the University of Minnesota, where scientific research teams are pioneering new treatments and an eventual cure for EB. This gift accelerates this life-saving research out of testing and 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 conducted by Paul Connolly, Director of Philanthropic Advisory Services at Bessemer Trust.
Additionally, EBRP recently called for global grant applications, to be reviewed by its newly-formed Scientific Advisory Board, led by Dr. Al Lane, Chairman Emeritus of Stanford University's Department of Dermatology. With the Deshe's financial support, new projects identified through the open grant process will be launched and existing projects will be accelerated.
Commenting on their family's donation, Ari & Ann Deshe said: "Our family's personal affliction with EB is what initially inspired us and our children to make this gift. When we met with Alex and Jamie Silver, we learned about the life-saving work that EBRP is funding, and we knew that our commitment would go a long way to make a real difference in the lives of people living with this terrible condition. In our meeting, we told Alex that we're on board – we would love to see this disease gone and we want to be a part of helping eradicate it, forever."
"It is hard to find a stronger partner in the fight to cure EB than the Deshe family, and we welcome the tremendous support of Ari, Ann, Elie, David, Dara and Daniel," said Alex Silver, Chairman of EBRP. "The Deshe family wants to move this cause forward and change the lives of all those suffering from EB. We are tremendously grateful for their support and commitment to seeing this through. You hope for a family or donor who has compassion and heart to stay involved to help accelerate progress."
Members of the Deshe family will join the Board of Directors of the EBRP to help advance the foundation's mission to back the most promising scientific research around the world.
About EB Research Partnership
EB Research Partnership (EBRP) is the largest 501(c)(3) 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 was formed in October 2014 through the merger of Jackson Gabriel Silver Foundation and Heal EB. To learn more about Epidermolysis Bullosa and to donate to research for a cure, please visit www.ebresearch.org.
About the Deshe Family
Ari is the founder and Chairman of Safe Auto Insurance Co. and has served on numerous boards. Ann Schottenstein Deshe helps run the Deshe Family Foundation, which supports a variety of causes. Elie and Daniel are partners and founders of VFD Marketing. David is the founder and President of Vero Water. Dara is the founder of Simply Framed. Ari and Ann reside in Miami, Florida as do three of their children Elie, David and Daniel. Dara Deshe Segal resides in Denver, Colorado with her husband Zachary. The Deshe family is personally affected by EB and has made partnering with EBRP and curing EB a top commitment of the Deshe Family Foundation.
Sarah Novatt / Mitchell Schwenz
SOURCE EB Research Partnership