In the final episode of season 11, The Dudes discuss their major upcoming event: a challenging 200-mile bike ride in the Himalayas - to the top of the world’s highest paved road - over 19,000’. They talk about the logistics, the elevation challenges, and their preparation, including the use of altitude training masks. They also address concerns about food, accessibility, and health, highlighting the need to adapt to unforeseen circumstances.

Sean and Kyle express their excitement and some nervousness about the trip, emphasizing the importance of taking on such challenges despite the risks. The Dudes reflect on the support and inspiration they find within the rare disease community, underscoring the shared goal of pushing boundaries and raising awareness.

Also in this episode:

• An update on Kyle's adaptive van situation featuring a note from Terry in Australia.
• Rare Resilience: Onno Faber
• Thank you notes: The Kindness of strangers and Team FARA supporters

Links and resources:

• More about Sean and Kyle's trip.
• The route map.
• Donate to Team FARA Himalayas.
• Visit our segment partner: #RAREis

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:

• Sean plans to burn the clothes he wears on the climb up the world's highest road
• Rare Resilience: Kelly Barendt
• Thank you notes: Bio News and the FARA Staff

Links and resources:

• John's previous episode:
  
  • 144 - DD pt2: Do good and...with John Crowley
• BIO
• Make a Wish Foundation
• Visit our segment partner: #RAREis

Rob Long shares his journey with Uplifting Athletes, an organization dedicated to leveraging the influence of athletes to support those impacted by rare diseases. Rob and Brett Brackett took over leadership in 2018, revitalizing the organization's mission. They have several powerful initiatives including The Young Investigator Draft, Lift for Life, Leadership Development, and Uplifting Experiences.

Rob reflects on the organization's impact, sharing a touching story of how a seed grant recipient's research saved his life. This personal connection underscores the profound ripple effect of Uplifting Athletes' work.

Also in this episode:

• Rare Resilience: Jose Flores, Motivational Speaker
• Thank you notes: John the mailman and the Masterclass app

Links and resources:

• Rob's previous episode:
  
  • 070
• Episode with Rob's Rare Resilience segment
• Jose Flores social media:
  • Instagram
  • Facebook
  • LinkedIn
• Visit our segment partner: #RAREis