EB Research Partnership (EBRP) grew out of a collaboration between the Jackson Gabriel Silver Foundation (JGSF) and Heal EB. These organizations were started by two families on separate coasts that shared a singular goal - to find a cure for their sons, Jackson Silver and Michael Fullmer, respectively, and all other children and adults that suffer from EB. With the community’s support, EBRP has been aggressively and efficiently funding research since 2010. To date, EBRP has raised over $4 million for research grants and has been instrumental in securing an additional $35 million for critical EB research. EBRP has given grants to support the cutting-edge work at institutions such as the University of Minnesota, Stanford University, and the University of Southern California. EBRP also supports research infrastructure to ensure that treatments will get to those in need as swiftly as possible.
The mission of the EB Research Partnership (EBRP) is to fund research aimed at treating and curing EB. Individuals with EB, a rare disease affecting only 30,000 people in the U.S., lack a critical protein that binds the layers of skin together, causing the skin to tear apart, blister and sheer off from the slightest touch. This leads to severe pain, disfigurement and wounds that never heal. Blisters form all over the body, inside and out.
“Research is necessary to make life-changing treatments and cures a reality for those living with EB,” said Alex Silver, co-founder, executive chairman, and executive board member of EBRP.
One of the greatest challenges that EBRP faces is funding EB research at a rate that will benefit this generation of those living with EB. Partnering with both for-profit and nonprofit organizations, EBRP employs a venture philanthropy model to achieve its goals. In this model, if research funded by EBRP has commercial success, the foundation shares in the profits, reinvesting in further research.
“Research!America is a fantastic resource to rare disease nonprofits,” said Silver. “First, the ability to meet and communicate with other rare disease organizations is valuable. Second, knowing that there is an advocacy organization out there that works tirelessly to advance the common needs of rare disease organizations helps make our mission easier. “
According to Silver, EBRP has three main goals toward achieving a cure for EB. The first is to ensure the continued flow of funding into rare disease research. The second is to modernize the approval and regulatory process for rare disease.
“Risk is relative,” said Silver. “Living life with a life-threatening rare disease is not the same as having a common cold. The time to approval and level of risk associated with drug and treatment approval should commensurate with the risk of having a rare condition.”
The third goal is to improve the nonprofit business model by using tools like venture philanthropy. Doing so will lead to greater sustainability and success.
“Curing EB will take a lot of hard work and a little bit of good fortune,” continued Silver. “We want to make sure that we are in the strongest position possible to take advantage of opportunities when they arise. I can’t stress enough the need to have good partners, innovative thinking and a collaborative approach. We don’t have the luxury of time to reinvent the drug approval process. However, we can be as efficient as possible - we owe that to those suffering from EB.”
To learn more, visit http://ebresearch.org.