EBRP, EBRF and other Global EB Charities Collaborate to Announce $1 Million Award for EB Simplex

EB Research Partnership, EB Research Foundation, the Oros Family and EB Medical Research Foundation, join together to accelerate treatments and cures for EB Simplex.  Proposals must be submitted by January 25, 2019


NEW YORK, Dec. 21, 2018 (GLOBE NEWSWIRE) -- EB Research Partnership, the largest 501(c)(3) nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB), announced today a $1 million research award for a disease-modifying treatment or cure for Epidermolysis Bullosa Simplex (EBS). The award to advance breakthrough and innovative treatments for EBS was made possible in collaboration with partner EB nonprofits the EB Research Foundation of Australia and EB Medical Research Foundation along with the John and Anne Oros Foundation. The group will be sourcing proposals from the medical and scientific communities with the best ideas being awarded up to $1 million to support the winning research projects. Submissions will be reviewed by EB Research Partnership’s Scientific Advisory Board which is chaired by Dr. Anne Lucky and recommends awards and grants, based on their evaluation of the potential for development of commercially viable treatments and cures for EB.  All parties - non-profit and commercial - are encouraged to apply.

“We were founded on the principle that through partnering with those who share our mission, we can move faster to deliver treatments and cures for EB. We are honored to work with an international team to create an award that will bring the best ideas to treat EB Simplex forward”, Alex Silver, Chairman & Co-Founder of EB Research Partnership.

“We were inspired to start our organization through our work with a child with EB Simplex so this award has special significance to us as an opportunity to meet an unmet need.  We look forward to continuing to collaborate with worldwide leaders in the pursuit of cures for EB”, Scott Didier, Chairman & Co-Founder of EB Research Foundation.

EB is a group of devastating and life-threatening genetic skin disorders affecting around 500,000 people worldwide. EB Simplex, the most common subtype of EB, results from gene mutations in Keratins V and XIV, crucial components of intermediate filaments which provide stability to the skin. Patients experience painful blistering of the epidermis that is either localized to the hands and feet or widespread.

Although EBS is the most common subtype of EB, there are few promising projects in the current research landscape aimed at developing therapies for EBS patients. EB Research Partnership, EB Research Foundation, EB Medical Research Foundation, and the John and Anne Oros Foundation look to fund and accelerate research projects focused on this underserved community.

Proposals will be accepted through January 25. Applicants should submit their proposals to grants@ebresearch.org.

About EB Research Partnership
Founded in 2010, 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.

About EB Research Foundation
The EB Research Foundation is an Australian registered not-for-profit charity founded in late October 2016. Driven from a grass-roots affiliation with EB, the EB Research Foundation has a strong supporter base and an emphasis on raising significant funds through Corporate and Individual sponsorships & hosting events. The EB Research Foundation is dedicated to raising funds to accelerate research directed towards increasing life expectancy for EB patients and ultimately a cure. It ends with a cure! With no Government funding, the EB Research Foundation relies solely on the generosity of businesses and individuals. To read more about the EB Research Foundation go to: www.ebresearchfoundation.org

About EB Medical Research Foundation
The EBMRF is an all-volunteer, non-profit 501(c) Foundation dedicated to funding research for EB, a rare, debilitating and often fatal skin disease. Our mission is to determine its causes, develop successful treatments, and ultimately find a cure. The grants awarded with your donations fund an aggressive research agenda aimed at developing breakthrough therapies in collaboration with Universities and leading private and public biotechnology companies. EBMRF's scientific collaborations incorporate a venture philanthropy model, in which we participate in the economics of any potential scientific commercialization. Royalties and revenue generated from our venture agreements are then reinvested to further advance critical research. The foundation's goal is to cure EB by raising awareness through special events, the media and fundraising programs.  For more information, please visit www.ebmrf.org.

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