What happens when a teenager asks, “Why are you in a wheelchair?” at the bar... and it’s not weird at all? In this episode, Sean and Kyle reflect on what it means to be curious, considerate, and occasionally oblivious when it comes to disability—and why teens might just be winning in the empathy department. From cruise ship conversations to elevator etiquette, we explore how age, culture, and confidence shape the way people react (or don’t react) to disability.

Then we catch up with our good friend Matt Lafleur—writer, rare disease advocate, and now children’s book author! Matt shares how he turned a lonely diagnosis into a meaningful calling, why vulnerability is hard but necessary, and how a red panda named Professor Hong is helping kids understand life with Friedreich's Ataxia. Whether you're in the tunnel or finally seeing the light, this episode is packed with honesty, encouragement, and a few laughs about mystery garbage collectors.

Links & Resources

• Matt’s Childrens Book
• Matt’s NYT Article
• Matt’s Column
• What Do You Do With An Idea?

Ever feel like your energy levels are on a shoestring budget? In this episode, Sean and Kyle tackle the daily balancing act of managing energy, especially with a rare disease. From the science of sleep hygiene (which, by the way, Kyle has mastered like a bedtime ninja) to the mystery of why spoon theory uses, well, spoons as its currency, they dive into the mental and physical toll of fatigue. They share personal stories of how they’ve learned to prioritize commitments, manage FOMO, and avoid turning into a "pile of poop" at social events. Plus, Kyle admits that yes, a $400 night guard does indeed feel like a tiny hug for his teeth.

But it's not all sleepytime talk—this episode is packed with real-life strategies for handling exhaustion without guilt. They break down how they navigate full-time jobs, social lives, and the ever-present need to rest, all while avoiding the misconception that fatigue equals laziness. The dudes also dish out some wisdom for non-disabled folks on how to be more mindful of invisible energy limitations (hint: holding the elevator for two extra seconds won’t kill you). Whether you’re managing a rare disease or just trying to figure out why you can’t stay awake past 9 PM, this episode is a must-listen. And as always, they wrap up with a dose of gratitude—this time for third graders with surprisingly deep questions and flight attendants who appreciate a good old-fashioned thank-you note.

Also in This Episode:

• Kyle introduces the term “Sleep Hygeine”

Links and Resources

• Spoon Theory

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When it comes to wheelchair repairs, navigating the system shouldn’t be harder than the fix itself—but for Sean, that’s exactly what happened. In this episode, he shares the frustrating saga of dealing with a major medical equipment provider, exposing the inefficiencies, miscommunications, and outright absurdities of the process. From lost time to pointless bureaucracy, Sean’s experience highlights the challenges disabled individuals face just to maintain their independence. It’s a wild ride that many in the disability community will relate to—if not shake their heads at in disbelief.

But this episode isn’t just about headaches—it’s also about resilience and storytelling. Kyle and Sean sit down with author and father of three, Jay Armstrong, who was diagnosed with cerebellar atrophy later in life. Jay opens up about his journey from grieving his past life to embracing the present, sharing how humor and gratitude shape his perspective. With multiple books under his belt, including Bedtime Stories for the Living, Jay’s insights into self-discovery, perspective shifts, and finding meaning in everyday moments offer a fresh take on what it truly means to adapt. Stick around for a deep, thoughtful conversation filled with honesty, laughs, and a whole lot of wisdom.

Also In This Episode:

• Thank you notes: The Staff at Lincoln Financial Field, and Dan from Manayunk Studios

Links And Resources:

• Jay’s Website where you can find all his books: Write on Fight on

This episode features an interview with Heidi Wallis, Executive Director of the Association for Creatine Deficiencies (ACD). Heidi discusses ACD’s efforts in advancing research, treatments, and newborn screening for creatine deficiency disorders. Heidi shares her personal journey as a mother of two children with creatine deficiencies, emphasizing the importance of early diagnosis and treatment. The conversation also explores the challenges and progress in securing newborn screening for these disorders, underscoring ACD’s mission to improve lives and ultimately find a cure.

Also in this episode:

• Sean explains how the Nu Motion building in Sacramento is an accessibility nightmare.
• Thank you notes: Andra Stratton, and Sean’s friend Hanan.

Links and Resources:

• Association for Creatine Deficiencies (ACD)
• Chan Zuckerburg Initiative (CZI) Rare As One
• Uplifting Athletes

In this episode, we dive into a topic that hits close to home: the tension between hoping for a cure and fully embracing life as it is today. We explore how dreaming about a different future—whether through medical breakthroughs, financial success, or other changes—can be both motivating and, at times, limiting.

Kyle shares a frustrating parking lot experience that sparks a conversation about accessibility, awareness, and the small but constant challenges we face in daily life with a disability. From there, we reflect on how our perspectives have evolved over the years, the importance of finding joy in the present, and how we each work to strike a balance between planning for the future and making the most of today.

Plus, in the spirit of gratitude, we take a moment to recognize some incredible people in our lives who make a difference.

Join us for an honest, thought-provoking, and relatable discussion about perspective, priorities, and the power of focusing on what truly matters.

Also In This Episode:

• Parking Like a Boss
• Thank you notes: Leona Strait and Aunt Libby

This episode features a heartfelt conversation with Rivki, a mother of six, including her youngest son, Eli, who was diagnosed with CTNNB1 syndrome, a rare genetic disorder. She shares her journey of recognizing early developmental concerns, overcoming medical dismissals, and advocating for a proper diagnosis. She discusses the impact of Eli's condition on the family, the challenges and joys of raising a child with a challenging rare disease, and the importance of allowing her other children to express their full range of emotions. As a therapist, she emphasizes inclusivity, the power of curiosity in seeking answers, and breaking societal stigmas around disabilities. Her story is one of resilience, growth, and fostering understanding in the face of adversity.

Also In This Episode:

• Sean's positive TSA experience
• 43 year old small talk
• Thank you notes: Rocky the Rare At Sea travel agent, and a kind Trader Joe's employee

In this episode, Sean and Kyle dive into the evolving nature of independence, especially in the context of disability and life transitions. Kyle shares his journey toward hiring a personal care attendant (PCA) and how his perception of needing help has changed over time. The discussion explores the fine line between dependence and empowerment, emphasizing that asking for help can actually lead to greater freedom, not less. From navigating accessibility challenges at home to managing daily tasks with tools like a backpack or a well-placed handrail, they break down how small adjustments can make a huge impact on self-sufficiency.

The conversation also touches on the emotional complexities of receiving assistance, the language around offering help, and how external perceptions can shape personal identity. Plus, Sean shares a frustrating small business experience, and both hosts reflect on the people who have been game changers in their independence. To wrap things up, they express gratitude to those who have supported them in big and small ways. Tune in for an honest, sometimes humorous, and always thoughtful conversation about redefining independence on your own terms.

Also In This Episode

• The Dudes' factors that affect sleep quality
• Sean files a complaint about a local business
• Thank you notes: Katie Lloyd, Ken Miller

This episode focuses on setting and maintaining goals beyond the traditional New Year's resolutions. The Dudes discuss the importance of checking in on progress, making adjustments, and recommitting to goals even after January. 

Kyle

• Hiring a personal care attendant for assistance with daily tasks 
• Staying engaged with rideATAXIA fundraising efforts
• Finding an enjoyable and sustainable exercise routine 

Sean

• Reducing unnecessary spending
• Limiting Risk time
• Prioritizing quality sleep for overall well-being

Also in this episode:

• Kyle's freezing feet
• Sean's progress climbing stairs
• Thank you notes: The FARA Energy Ball Planning Committee, and Friends Bill & Dee

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.