Giving Compass’ Take:
• WeWork reports on a partnership aiming to help cure Epidermolysis bullosa (a debilitating childhood illness) through the mechanisms of venture philanthropy.
• What can other venture philanthropists learn from the EB Research Partnership’s pivot from a more traditional nonprofit model? Could it apply to research for other rare diseases?
It takes most nonprofits dedicated to finding a cure for debilitating diseases — like cystic fibrosis or, in the case of the federal government, HIV/AIDS — decades to discover a breakthrough treatment or get a drug approved, often after raising billions of dollars.
The EB Research Partnership is on its way after only nine years.
Epidermolysis bullosa, or EB, is a potentially deadly genetic skin condition. Those afflicted are missing an essential protein that binds the skin’s layers — without it, the skin blisters and tears, leading to severe pain, permanent scarring, and disfigurement. Because there is no cure, doctors typically tell parents of children born with EB (1 in 200 American babies each year) to try to make life as normal as possible. That can mean spending hours every day wrapping sores with bandages to prevent infection.
EB Research Partnership’s progress — $25 million raised and 50 research projects funded, half of which are active — is the result of its innovative venture-philanthropy model that cofounder Alexander Silver says was “borne out of a mistake I swore we’d never make again.”
Soon after their son, Jackson, was born with a severe form of EB in 2007, Alexander and his wife, Jamie, created the Jackson Gabriel Silver Foundation to fund research to help find a cure for the disease. It didn’t take long for the family to realize they had made a mistake adopting a traditional nonprofit model — relying on grants to fund research — after the foundation’s first project ended up in limbo due to organizational disarray.
Read the full article about innovative investing to cure a childhood disease by Vivian Giang at WeWork.
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