232 – Can Rare Disease Create Heroes?

October 23, 2023 twodisableddudes

Episode 232 welcomes Matt LaFleur who shares his journey as a rare disease patient with Friedreich’s ataxia (FA). Matt talks about how he transitioned from viewing himself as a victim of FA to seeing himself as a hero in his own story. He describes the impact of the diagnosis as an “inciting event” and highlights how the hero’s journey is not just a linear path but a cyclical one. Matt emphasizes the importance of taking responsibility and finding little victories along the way, despite the ongoing presence of FA. The discussion touches on various aspects of life with a rare disease, relationships, and personal growth. Matt also shares his experience of presenting at the FA Symposium and how he and his co-presenters used mythical characters to relate their topics to the hero’s journey concept. The episode offers a unique perspective on finding inspiration and resilience in the face of adversity.

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This episode brought to you in part by Reata Pharmaceuticals.

Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

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