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Turning the Pharmaceutical Model Upside Down

How a nonprofit gave birth to a company that aims to disrupt Big Pharma

Wed, 11/27/2019 - 12:02
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The company Grace Science was born through an inversion of the normal business sequence. Typically, if an entrepreneur launches a startup and it succeeds, the founders will create a nonprofit, declaring, “We want to give back.” In this case, the nonprofit spawned the startup.

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The company’s inception accelerated when Matt Wilsey first met with Carolyn Bertozzi in 2015. Bertozzi is the Anne T. and Robert M. Bass Professor of Chemistry and professor of chemical and systems biology and of radiology (by courtesy) at Stanford University.

Wilsey’s daughter, Grace, has an ultra-rare disorder caused by a mutation in a gene known as NGLY1. Only 54 people in the world have been diagnosed with the disease. In 2014, Wilsey and his wife, Kristen, created a nonprofit, the Grace Science Foundation, in their quest to find a cure. The foundation has raised about $9 million to date.

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