Venture philanthropy: When donating to a charity is an investment in its future

Jackson Gabriel Silver Foundation

The very first piece I wrote on Medium was this. In short, it’s about a little boy with a devastating genetic skin disorder and his parents, two of my dearest friends I met during college, who set up a foundation in their son’s name to fund research to find a cure. That little boy, Jackson—whose skin blisters and falls off because it lacks a protein—is now six years old.

I serve on the Board of Directors of the Jackson Gabriel Silver Foundation (JGSF). Over the past five years, we’ve raised $2 million for research to end that terrible disease, Epidermolysis Bullosa (EB). We’re hoping to end the daily cycle of pain faced by Jackson and other EB sufferers, and to enable them to lead full, active lives.

JGSF engages in a new kind of philanthropy: venture philanthropy. It’s a model that takes concepts and techniques from venture capital finance and business management and applies those tools to achieving philanthropic goals. JGSF makes a traditional donation to a research project, like a non-profit would, but with the added upshot of generating a recurring donation stream if the therapy or product is commercially successful. Imagine a self-sustaining and recurring philanthropic mechanism based on royalties: We take some of the commercial funds and reinvest them back into research.

I’d like to share the great work the Foundation has been doing to combat EB:

• JGSF-backed research was purchased by Shire Pharmaceuticals to bring an EB treatment to clinical trial.
• A researcher showed how to gene-correct EB safely, and JGSF is backing his work to make the treatment a reality for all of those with EB.
• At least one EB clinical trial will be conducted in both 2013 and 2014—the first in a long time.
• In 2013, we expect to provide $450,000 in grant support to EB researchers, double what JGSF awarded in 2012.

Every October we host a benefit event in New York City, ACTion for Jackson, but we also reach out to our networks across the country. None of the afore-mentioned accomplishments could have been achieved without private donations to JGSF. Together, we are making meaningful changes in the field of EB research.