Raising Health
Rare Disease, Big Impact with Matt Wilsey
Dec 10, 2024
Matt Wilsey, co-founder and CEO of Grace Science, shares a deeply personal journey after his daughter Grace was diagnosed with NGLY1 deficiency. He discusses the arduous path families face in rare disease diagnoses and the transformative advancements in genetic sequencing. Matt highlights innovative gene therapies, like AV9, aimed at treating NGLY1, and emphasizes the importance of strategic partnerships with scientists such as Nobel laureate Carolyn Bertozzi. The conversation also sheds light on navigating regulatory challenges in drug development.
23:08
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Quick takeaways
- Matt Wilsey's journey from a worried father to a biotech leader illustrates the emotional drive behind personal stakes in health innovations.
- The collaborative efforts in Grace Science highlight the critical role of strategic partnerships and modern genetic testing in developing rare disease therapies.
Deep dives
The Devastating Beginning and Promise for a Cure
Matt Wilsey faced unimaginable fear when his daughter Grace was born in critical condition, leading him to promise to discover what was wrong. Grace was diagnosed with NGLY1 deficiency, a rare genetic disorder affecting only about 130 cases globally, compelling Matt to leverage his entrepreneurial background to create a solution. Despite having no scientific experience, Matt founded Grace Science to develop treatments for Grace and others battling rare diseases, symbolizing his transformation from a worried father to a committed leader in biotech. This journey reflects the emotional and professional drive that motivates many entrepreneurs, particularly in the health sector, where personal stakes are incredibly high.
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