Page 50 - Menlo Magazine: Winter 2018

WINTER 2018
ALUMNUS PROFILE
Matt Wilsey ’96
Rethinking Cures for Rare Diseases
Matt Wilsey ’96 had a textbook Silicon Valley success story. He’d graduated from Stanford, worked in the White House and Department of Defense, and then transitioned into a career as a tech executive, including cofounding Zazzle.com with Bobby Beaver ’96 and Je Beaver ’97. But in 2009, his life took a major turn.
Matt and his wife, Kristen, welcomed a baby girl they named Grace. Early on, they grew concerned about Grace’s health. She was a icted with several serious ailments, and doctors couldn’t determine the root cause.
A er more than three years, researchers told the family that her problems were due to mutations of a gene called NGLY1. ese mutations are exceptionally rare; only a few dozen people in the world are known to have the disorder.
Driven by their search for answers, Matt and Kristen
founded the Grace Science Foundation (gracescience.org), an organization that aims to nd a cure for NGLY1 De ciency and, indirectly, provide a blueprint for seeking cures for other diseases by speeding up the research and development process and encouraging more information sharing than is common in the eld. He recently started a pharmaceutical company to develop therapies in oncology and neurodegeneration.
Matt was kind enough to answer some questions about his family’s journey for Menlo Magazine.
How will your work change the medical world over the coming years?
I’ve had a varied career, but I identify as a tech entrepreneur. at led us to use a start-up model to run our consortium. We are lean and at, and the environment is open and collaborative. We bring together subject matter experts
to work on something that they are unfamiliar with. is happens o en in tech but not in medicine.
e good news is that our
model is working and people
are starting to notice. It is my
belief that our approach will
be used by companies and
foundations to iterate results
quickly and nd therapies
faster. is intersection of tech and health is the next big wave.
What is the most exciting thing Grace Science is doing right now?
We have unlocked new ways to treat multiple myeloma and Parkinson’s, and we are just scratching the surface. When we started, it was just one patient. Now we have the possibility of treating or curing millions of people.
At a micro level, I’m excited that we have a good possibility of treating Grace before she turns 10. When we started, I gave our team ve years to develop a cure. is was crazy at the time, but we have a real shot at hitting our ambitious goal.
The New Yorker highlighted your story in a 2014 issue. What e ect did that have on your work?
It raised awareness of rare diseases, broadly speaking. irty million Americans su er from a rare disease. Collectively, rare diseases are an epidemic and a largely unnoticed social issue.
Our hope was that the article would lead to more donations and additional key scientists joining the team, but it really didn’t. In a way, it made our job more challenging.
We are contacted weekly by parents around the world trying to cure their child’s disease. is is a heavy burden. We want to help everyone, but it’s impossible. ere simply aren’t enough hours in the day.
50