Can Austin Lead the Race to Solving Rare Diseases with the Founders of the Firefly Fund episode artwork

EPISODE · Oct 2, 2024 · 38 MIN

Can Austin Lead the Race to Solving Rare Diseases with the Founders of the Firefly Fund

from Austin Next · host Jason Scharf

Nothing motivates a parent to action like a sick child, and for the Andrews family, words like no and impossible became mere roadblocks on their journey to help their kids. Our guests, Pam and Chris Andrews, founders of the Firefly Fund, turned their battle with their daughters' rare genetic disorder into a mission to revolutionize rare disease research and treatment here in Austin and beyond.Episode HighlightsFirefly Fund's OriginEstablishing a Rare Disease Center at UT Dell Medical School Navigating the Diagnostic OdysseyInterplay of Tech Innovation and New Business Models in HealthcareDownstream Effects of Rare Disease AdvancementsWhat's Next, Austin?Pam Andrews: "Let's see how the intersection of technology and healthcare really can transform healthcare because I think that rare disease can light the way and inform the way that we do precision medicine for generations to come. So that's what we want through the Center for Rare Disease here in Austin is for it to evolve and unfold in a partnership with the rare disease community."Chris Andrews: "My dream is that when people think of Austin, they'll think of the University of Texas, they'll think of barbecue, but they also will think of a place where people work to save lives."Firefly Fund: Website, Facebook, X/Twitter, Instagram, LinkedIn -------------------Austin Next Links: Website, X/Twitter, YouTube, LinkedInEcosystem Metacognition Substack

Nothing motivates a parent to action like a sick child, and for the Andrews family, words like no and impossible became mere roadblocks on their journey to help their kids. Our guests, Pam and Chris Andrews, founders of the Firefly Fund, turned their battle with their daughters' rare genetic disorder into a mission to revolutionize rare disease research and treatment here in Austin and beyond.Episode HighlightsFirefly Fund's OriginEstablishing a Rare Disease Center at UT Dell Medical School Navigating the Diagnostic OdysseyInterplay of Tech Innovation and New Business Models in HealthcareDownstream Effects of Rare Disease AdvancementsWhat's Next, Austin?Pam Andrews: "Let's see how the intersection of technology and healthcare really can transform healthcare because I think that rare disease can light the way and inform the way that we do precision medicine for generations to come. So that's what we want through the Center for Rare Disease here in Austin is for it to evolve and unfold in a partnership with the rare disease community."Chris Andrews: "My dream is that when people think of Austin, they'll think of the University of Texas, they'll think of barbecue, but they also will think of a place where people work to save lives."Firefly Fund: Website, Facebook, X/Twitter, Instagram, LinkedIn -------------------Austin Next Links: Website, X/Twitter, YouTube, LinkedInEcosystem Metacognition Substack

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Can Austin Lead the Race to Solving Rare Diseases with the Founders of the Firefly Fund

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Nothing motivates a parent to action like a sick child, and for the Andrews family, words like no and impossible became mere roadblocks on their journey to help their kids. Our guests, Pam and Chris Andrews, founders of the Firefly Fund, turned...

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