Two Disabled Dudes

Season 13 kicks off with us catching up after a well-earned break, sharing our reflections on how time away can spark creativity and renew energy. Sean talks about surprising himself with a change to his daily Starbucks routine, leading to a conversation about the small adjustments we make for a healthier, more balanced life. The dudes reflect on travel challenges and accessibility, from Sean navigating Amtrak trains to Kyle celebrating his parents’ 50th anniversary in Hawaii—complete with a game-changing beach wheelchair experience.

We also introduce our exciting new venture, Rare at Sea, a group cruise for the rare disease community designed to foster connection, adventure, and support. We discuss how cruising offers accessibility and flexibility for people with disabilities while creating opportunities for meaningful interactions that go beyond the science of rare diseases.

Links and Resources

Rare at Sea

In this final episode of 2024, Sean and Kyle reflect on their evolving perceptions of living with Friedreich’s Ataxia (FA) and how their expectations and outlooks have shifted since their diagnoses. They dive into topics like adaptive technologies, changing friendships, and how urgency influences their goals and priorities. Wrapping up with heartfelt thank-you notes, the duo celebrates the impact of community and innovation.

Listeners are invited to embrace reflection, celebrate their progress, and prepare for a new year of possibilities. Email us: [email protected] or comment on Instagram or Facebook.

In this thought-provoking episode, Sean and Kyle discuss what laws they would institute if given ultimate power. They each introduce three laws that would benefit individuals with disabilities and promote greater understanding among all citizens.

These ideas spark a powerful reflection on the need for empathy, inclusivity, and social responsibility.

Listeners are encouraged to join the conversation by sharing their own "laws for a day.”

Also in this episode:

• Sean and Kyle's experience at the FARA/CHOP FA Symposium
• Kyle's new van!
• Thank you to Mark and Chavez

In this candid and deeply personal episode, Sean and Kyle tackle the emotional and mental struggles that come with setbacks—whether from injury, burnout, or life's unexpected challenges. Sean opens up about his difficult recovery journey after a recent injury, where even though surgery wasn't required, the road to getting back on track has been much longer and tougher than expected. With vulnerability and honesty, they explore the ripple effects of physical limitations on emotional well-being, offering insights on how interconnected our mental, emotional, and physical states truly are.

Listeners will appreciate Sean's transparency as he shares the difficulty of regaining momentum after months away from his usual routine, like going to the gym. Together, they discuss practical ways to pull yourself out of a dark place—whether it’s setting small goals, staying accountable to someone, or simply taking those first small steps back toward movement and self-care. They highlight the importance of being kind to yourself during the process and recognizing that it's okay to not have it all figured out. This episode is a reminder that setbacks are a part of life, and the path to healing isn’t about finding a quick fix, but a series of steps that help you move forward.

Whether you’re recovering from an injury, dealing with mental burnout, or just looking for ways to break through a rough patch, Sean and Kyle’s heartfelt conversation is packed with relatable moments and practical advice. Tune in for an inspiring and honest discussion on how to navigate life’s challenges and keep moving forward, even when progress feels slow.

Also in this episode:

• After 10 years, Kyle got a credit card again.
• Thank you notes: Sean - City of West Sacramento and ride share service Via; Kyle - Woman in the TSA line that lifted his bag onto the belt.

In this episode, we recount a challenging experience during our cycling trip in the Himalayas. Sean shares the story of his accident, where he was forced to brake hard on the trike, causing it to flip and throwing him to the ground. The impact left him with severe pain in his shoulder and hip, making it difficult to breathe initially and leaving him unable to continue the ride. Despite his initial hope that he might recover quickly, the pain worsened, and he realized he needed to seek medical attention back in the United States.

With the help of his teammates Colin and Colin's daughter, Alexis, Sean navigated the arduous journey back home, dealing with intense pain throughout. Upon arriving in the U.S., Sean visited the ER to begin his recovery process. Meanwhile, the rest of the team continued the ride, facing grueling climbs and extreme conditions. The episode highlights the resilience and determination of both Sean and the team, underscoring the physical and emotional challenges of undertaking such a demanding journey.

This trip would not have happened without these team sponsors: Biogen, Lexeo Therapeutics, Cure FA Foundation, Masonry Builders, Nugget Markets, and The Avery Family Foundation. Gear provided by: Catrike, Gorewear, and Zeiss Camera Lenses.

The episode ends with a discussion about what's next. Kyle will focus on development of the rideATAXIA fundraising program. Sean will climb the world's longest staircase in Switzerland next year.

This episode kicks off Season 12: An abbreviated season. After eight years of consistent publishing, the Dudes are scaling back for the rest of 2024 in order to fine tune the show, focus energy elsewhere, and just catch up on life. This season will consist of five episodes, one for each month through December. Regular, weekly episodes will resume in February 2025 with Season 13. 

The reflection of their trip to India will span over two episodes. In this episode (pt.1), Sean and Kyle reflect on their recent trip to India, describing both the challenges and highlights of their adventure. They mention the initial stress of the journey, the support they received from sponsors and donors, and the excitement and admiration from friends and family. 

The episode details their activities, including meeting researchers at the All India Institute for Medical Sciences (AIIMS) and connecting with the FA patient community of India. They recount the logistical difficulties they faced, such as getting their trikes through Customs and navigating airport security with their group, including the language barriers and misunderstandings.

Upon arriving in Leh, they acclimated to the high altitude, explored local culture, and prepared their Catrikes for the upcoming trek. The Dudes share humorous and stressful moments, such as the infamous white scarfs, dealing with intense sun exposure, and adapting to local cuisine.

Finally, they describe the start of their bike ride, marked by a traditional dance and music presentation by local performers, emphasizing the support and encouragement they received throughout their journey. 

Be sure to catch episode 257 for the rest of the story.

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

In episode 252, Rob Long, executive director of Uplifting Athletes, revisits his rare disease journey. He recounts his college football days at Syracuse University and the abrupt onset of symptoms during his senior year. Rob shares the initial confusion and fear surrounding his diagnosis of a brain tumor, leading to surgery and a challenging recovery process. He reflects on the emotional toll of accepting his diagnosis and navigating through post-traumatic stress disorder (PTSD) in the years following.

Also in this episode:

• Kyle and Sean chat about squishy PB & J
• Rare Resilience: Nathan Peck, CEO of Cure VCP Disease

Links and resources:

• Route map for the Dude's ride in India
• Rob's previous full episode
• Episode with Rob's Rare Resilience segment
• Visit our segment partner: #RAREis