This episode (254) features an interview with John Crowley, who shares his journey into the rare disease space. John's involvement started in 1998 when his daughter Megan was diagnosed with Pompe disease, a rare form of muscular dystrophy. Determined to find a cure, John and his family embarked on a journey of research and entrepreneurship, ultimately founding a biotech company that developed a life-saving enzyme therapy for Pompe disease. Despite initial challenges, including financial struggles and personal sacrifices, John's perseverance led to successful treatments for Megan and other patients. Today, Megan and her brother Patrick are thriving adults, actively contributing to society despite their condition. John's commitment to patient-centered care extends beyond his personal journey. As CEO of Amicus Therapeutics and now as CEO of BIO, he continues to advocate for rare disease patients, emphasizing the importance of universal access to treatment and addressing barriers to healthcare. Throughout the interview, John's resilience and optimism shine through, serving as an inspiration for others facing similar challenges. His dedication to making a difference in the lives of patients and his unwavering determination highlight the transformative power of hope and perseverance in the face of adversity. Also in this episode: <ul> <li>Sean plans to burn the clothes he wears on the climb up the world's highest road</li> <li>Rare Resilience: <a title="kellyandfa" href= "https://www.instagram.com/kellyandfa" target="_blank" rel= "noopener">Kelly Barendt</a></li> <li>Thank you notes: <a href="https://bionews.com" target="_blank" rel="noopener">Bio News</a> and the <a title= "Friedreich's Ataxia Research Alliance" href="https://curefa.org" target="_blank" rel="noopener">FARA</a> Staff</li> </ul> Links and resources: <ul> <li>John's previous episode: <ul> <li><a href= "https://podcasts.apple.com/us/podcast/two-disabled-dudes-living-with-urgency/id1183613772?i=1000559269229" target="_blank" rel="noopener">144 - DD pt2: Do good and...with John Crowley</a></li> </ul> </li> <li><a href="https://bio.org" target="_blank" rel= "noopener">BIO</a></li> <li><a href="https://wish.org" target="_blank" rel="noopener">Make a Wish Foundation</a></li> <li>Visit our segment partner: <a href= "https://www.rareiscommunity.com/" target="_blank" rel= "noreferrer noopener">#RAREis</a></li> </ul>

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254 - From Dad to Advocate to CEO: John Crowley's Continued Commitment

Two Disabled Dudes - Living with Urgency

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