Rare Disease, Big Impact

  • Matt Wilsey
  • CEO + Cofounder, Grace Science
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Matt is a Silicon Valley entrepreneur, angel investor, and start-up advisor. In addition to consumer products and services, Matt invests in and advocates for biomedical research, drug development, and genetic sequencing technologies. Matt became a “rare disease hunter” and advocate after his daughter, Grace, was born with NGLY1 Deficiency. He has since funded nearly 75 scientists at 20 medical centers in 5 countries with the sole purpose of treating the disease.

When his daughter Grace was diagnosed with a rare genetic disorder called NGLY1 Deficiency, Matt and his wife 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 was born.

Grace Science is dedicated to pioneering approaches to scientific exploration that are faster, less expensive and more collaborative. Their 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, Grace Science’s work doesn’t just help the few — it impacts the lives of billions.

Highlights

"An Entrepreneurial Mindset to Rare Disease"

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"Recognizing Opportunity for Greater Impact"

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"Grace Science's Business Model"

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"Challenges and Opportunities of a For-Profit Entity"

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