Two Disabled Dudes

In this episode, Kyle and Sean discuss the importance of disability employment and accessible travel with guest Daniel Van Sant, Director of Disability Policy at the Harkin Institute. They explore the challenges faced by disabled individuals in the workforce, the significance of National Disability Employment Awareness Month, and the barriers to travel for those with disabilities. Daniel shares insights on advocacy, the need for positive representation of disabled individuals, and the current trends in airline accessibility. The conversation emphasizes the importance of visibility and self-advocacy in creating a more inclusive society.

It’s a live-recorded birthday hangout as Kyle turns 44 and Sean dials in from his new (very echoey) apartment mid-move. After shout-outs to folks in the live chat, the Dudes dive into a candid conversation about dreaming big—and how diagnoses, delays, and logistics don’t have to kill big goals, they just change how you chase them. Sean shares why he postponed his world’s-longest stairway climb and how reframing timelines, adapting methods, and asking for help keep the dream intact. Together they unpack urgency (doing the right things now), mindset (narratives that move you forward), and practicality (designing your life around reality, not an old vision). They wrap with gratitude notes to the friends and neighbors who’ve shown up when it counted.

This live episode features longtime friend and rare disease advocate Ben Forred. After years as a scientist studying rare conditions and leading a global patient registry, Ben launched Zebra Site Studios to design websites tailored specifically for rare disease organizations. In this conversation, Kyle, Sean, and Ben dig into the unique challenges of advocacy websites—balancing accessibility, multiple stakeholder needs, compliance, fundraising, and SEO. With his deep personal and professional experience in rare disease, Ben explains how he helps groups turn their online presence into a powerful, stress-free tool for connection and advocacy.

Sean and Kyle reconnect after travel, skipping a planned live stream to actually experience London. Kyle opens with the saga of curb-damage to his new accessible van—weeks of repairs, inspections, and isolation—before the relief of finally getting back on the road. From there, the conversation pivots to travel takeaways: how attitude—not just laws—shapes access. In London (and across the Netherlands and Paris), they encountered a “whatever it takes” mindset: bartenders hauling out awkward ramps with a smile, black cabs universally equipped and drivers eager to problem-solve for two chairs, and even a teenager from Portugal who wordlessly pushed Sean up a long riverside incline. Small gestures, big impact. They contrast that spirit with common U.S. experiences, arguing that readiness plus genuine welcome is the real accessibility flex. Highlights include a boat ride on the Thames, a not-quite-ramp-friendly pub called Walkers, an accessible-on-request Starbucks, and Kyle’s tiered advice for visiting Paris (bring someone—you’ll enjoy it more). Shout-outs close the show: Kyle thanks multilingual community connector Miriam in Belgium; Sean tips his cap to United Airlines for careful wheelchair handling. Listeners chime in from Hawaii to Pennsylvania, and the dudes wrap with a call to subscribe and join the next live session—birthday episode included.

Recorded live in-studio (CA and PA), Kyle and Sean welcome viewers and then dive into a vulnerable discussion about the transition from walking to using assistive devices like walkers and wheelchairs. Incorporating comments from the audience, they talk honestly about the embarrassment, shame, and pride tied to showing visible signs of disability, as well as the unexpected freedom and safety these tools can bring. The conversation expands into themes of feeling like a burden, hiding pain, struggling with speech in public or professional settings, and ultimately the power of owning one’s reality rather than hiding it.

This replay of our first-ever Two Disabled Dudes Podcast live broadcast captures all the excitement—and a few mic mishaps—of going live with our audience. Listeners from around the world joined in via chat while we shared personal updates, gave away a $20 Amazon gift card, and welcomed returning guest Effie Parks, host of Once Upon a Gene. Effie reflected on how our show inspired her to start her own podcast and shared moving stories of how her work connects and empowers rare disease families. Together, we dove into the vision for Rare at Sea, our upcoming group cruise in February 2026 celebrating Rare Disease Day. From accessibility perks to the joy of connecting without a strict agenda, we discussed why this trip is as much about friendship and fun as it is about awareness. We wrapped up with gratitude notes, an open invitation for anyone connected to rare disease to join us, and a reminder to catch our next live recording on August 17, 2025.

In the final episode of season 13, after a brief discussion about dog poop DNA, Kyle and Sean reflect on how their priorities, perspectives, and self-image have evolved over time. From awkward teen years and early adult panic to working through tough moments, they explore the power of hindsight and personal growth. The conversation dives into public misperceptions of disability, body image struggles, and the ways they’ve learned to let go of what doesn’t matter. They wrap up with gratitude for a supportive coach and a powerful book recommendation that’s reshaping how Sean thinks about leadership and service. Links and Resources Unreasonable Hospitality

In Episode 276, Kyle kicks things off with a brunch story involving an oversized, impossible-to-handle coffee mug and a series of well-intentioned but clumsy attempts to make it right. The episode then shifts gears with a fun and thought-provoking compilation of answers from past guests to the question: If you ruled the world, what would you change? Responses range from practical ideas like increasing accessibility and reducing barriers, to grand visions of kindness, open science, and even perfect weather in Pennsylvania. Each guest's answer serves as a reminder of how personal experiences shape our view of what the world could be. The episode wraps up with heartfelt thank-you notes: Kyle expresses his gratitude to all his generous donors by adding each of their names to his fundraising “spirit chain,” while Sean thanks Santino, a colleague who went out of his way to share how much he enjoyed Sean's recent corporate presentation. These moments of appreciation highlight the power of connection and acknowledgment in both personal and community-driven efforts. This episode is a reminder that even small gestures can have a world-changing impact. Links and Resources Team TelomereAssociation for Creatine Deficiencies (ACD)Write on, Fight onCTNNB1 Connect & CureIconRea of Hope

In this episode, Sean and Kyle kick things off with a nostalgic dive into Kyle’s latest midlife hobby—collecting Sacramento Kings basketball cards from the early 2000s. What began as a simple eBay gift for his nephew spiraled into a full-on tribute to his college years, complete with prized cards now stashed in a personal safe. The dudes banter about their shared sports memories, the glory days of Bibby and Weber, and how even Shaq’s son is now playing ball in Sacramento. It’s a fun and lighthearted reminder that small joys—like cheap sports memorabilia—can spark big waves of meaning. But the real heart of the episode comes from a face-to-face conversation with longtime friend Katie Stevens, executive director of Team Telomere. Katie opens up about her personal journey as a rare disease mom and how her experience shaped her leadership in the nonprofit space. She shares how Team Telomere has grown from a volunteer-run effort into a structured, strategic organization—with an eye on both care and cure. From care packages and community trust to groundbreaking research and a clinical trial aimed at treating telomere biology disorders, Katie gracefully bridges the science and the soul of rare disease advocacy. With honesty, wit, and wisdom, Katie reminds us that hope isn’t just a word—it’s a community, a strategy, and a force for action. Whether you’re in the trenches or working toward a cure, this episode delivers powerful insight into what it takes to lead with heart and keep moving forward. Links and Resources Team Telomere

Sean kicks things off with an update on his long-standing Starbucks habit, revealing surprising progress in cutting back—even if a freshly remodeled store briefly pulled him back in. It’s a light and honest moment that sets the tone before shifting into something deeper: a conversation with Brett Brackett, former NFL player and current president of Uplifting Athletes. Brett shares how his journey from the football field to rare disease advocacy has been driven by compassion, purpose, and a desire to give others a reason to hope. He takes us behind the scenes of the Young Investigator Draft—a one-of-a-kind event celebrating rare disease researchers like MVPs—and explains how Uplifting Experiences are creating unforgettable moments for families across the country. From locker rooms to lab coats, this episode explores the power of connection, the importance of genuine care, and the beauty of staying involved in what you love—even when life takes a turn. Links and Resources Uplifting AthletesUplifting Experiences

In this episode, Kyle and Sean get real about what it means when a circumstance such as rare disease forces you to let go of old dreams, grieve unexpected losses, and slowly uncover new paths forward. It’s an honest conversation about redefining fulfillment and learning to live fully — even when life looks different than you imagined.

In classic Two Disabled Dudes fashion, the episode opens with a hilariously painful recounting of bloodwork gone wrong. Kyle survives a multi-day ordeal involving broken systems, pre-dawn wake-ups, and a forgotten ID, while Sean’s appointment gets derailed by a national holiday his lab forgot existed. Moral of the story: get your labs done early—or prepare for a side quest no one asked for. Things shift from comedy to clinical trials with guest Kendall Davis, a rare disease advocate and engagement strategist who knows how to bridge the gap between pharma and real life. She shares how meaningful patient input—before a trial starts—can make or break its success, and why things like meals, Wi-Fi, and basic communication should never be afterthoughts. Kendall doesn’t shy away from the big questions either—like why the FDA offers “guidance” instead of hard rules, and how that leaves too much room for interpretation. It’s clear she’s doing the work to make trials more human, but whether the industry will keep up is a cliffhanger we’re still waiting to resolve. Links and Resources ICONTeam Telomere

In this powerful and heartfelt episode, we sit down with Erin, founder of the Rae of Hope Foundation, to talk about caregiving, community, and what it means to find joy even when life is hard. Erin shares her family’s journey following her daughter Reagan’s epilepsy and cerebral palsy diagnoses, how caregiving shaped her 30s, and how she’s now carving out space for herself as Reagan becomes more stable. We dive into the real stuff—guilt, resilience, and the healing power of connecting with people who just get it. Links & Resources: Rae of Hope websiteFollow Rae of Hope on InstagramReagan’s Run

In partnership with Jett Foundation, we roll into an inspiring conversation with a powerhouse panel of guests who prove that nothing—not even a ridiculously expensive adaptive wheelchair—can keep them from chasing their dreams. From power soccer to adaptive paragliding (yes, that’s a thing!), our guests share how nonprofits, grants, and a little creative Googling can help make adventure accessible. But it's not just about the gear—it's about mindset. Whether it’s treating life like a video game (level 29 and counting!), finding joy in teaching, meditating, or simply savoring a slice of pizza, these folks remind us that happiness is about perspective. Challenges? Sure. But as they say, keep moving forward, embrace the highs, and never underestimate the power of a good support system (or a really good cup of coffee). Special thanks to the Jett Foundation and everyone making life a little more accessible, one grant, goal, and friendship at a time. Keep living with urgency, folks—because the next level is right around the corner! 🚀♿🎉 Links and Resources (mentioned in this episode) Jett FoundationCure SMAParent Project Muscular Dystrophy (PPMD)Cure DuchenneMass Hospital School

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 BookMatt’s NYT ArticleMatt’s ColumnWhat 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: Links and Resources Spoon Theory nd

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: Lincoln Financial FieldManayunk Studios Links And Resources: 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: Links and Resources: Association for Creatine Deficiencies (ACD)Chan Zuckerburg Initiative (CZI) Rare As OneUplifting 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:

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: Rare At Sea