Our mission is to cure NGLY1 Deficiency. We do this by pioneering approaches to scientific discovery that are faster, less expensive and more collaborative.


We see a world without NGLY1 Deficiency. The innovations we develop along the way will be used to treat and cure other diseases.


Like many stories of hope, ours begins with struggle.

In 2013, Grace Wilsey was diagnosed with a rare genetic disorder called NGLY1 Deficiency. Her parents, Matt and Kristen, quickly discovered the incredible challenges they faced. At the time, Grace was one of only six known patients worldwide. Diseases that rare weren’t on the radars of big labs or pharmaceutical companies. Funding for research was virtually nonexistent.

The world wasn’t set up to save Grace. So Matt and Kristen did what any good parents would do — they set out to change the world.

And so Grace Science Foundation was born.

We are dedicated to pioneering approaches to scientific exploration that are faster, less expensive and more collaborative. Our advances aren’t just bringing us closer to a cure for NGLY1 Deficiency, they are being used to discover and treat countless other diseases. In this way, our work doesn’t just help the few — it impacts the lives of billions.


Foundation Leadership

Ryan Dant

Director of Patient Advocacy

Dr. Selina Dwight

Director of Genetics and Biochemistry

Dr. Kevin Lee

Chief Scientific Officer

Matt Wilsey

Chairman, President & Co-founder

Board of Directors

Pete Briger

Fortress Investment Group LLC

Chelsea Clinton

Clinton Foundation

J. Crandall

Oak Hill Capital Partners

Egon Durban

Silver Lake

Elle Stephens

Patient Advocate

Scientific Advisory Board

Dr. Darryl De Vivo

Columbia University

Dr. Greg Enns

Stanford University

Dr. Vamsi Mootha

Broad Institute

Dr. Kush Parmar

5am Ventures

Dr. Shinya Yamanaka

Gladstone Institutes

Dr. Huda Zoghbi

Baylor College of Medicine

Family Board

Technology Advisory Board

Michael Dearing

Harrison Metal

David Lee

Refactor Capital

Jeff Weiner

LinkedIn Corporation

Community Board

Join our community