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

• Katie, Team Telomere
• Heidi, Association for Creatine Deficiencies (ACD)
• Jay, Write on, Fight on
• Rivki, CTNNB1 Connect & Cure
• Kendall, Icon
• Erin, Rea 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 Athletes
• Uplifting 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

• ICON
• Team 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 website
• Follow Rae of Hope on Instagram
• Reagan’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 Foundation
• Cure SMA
• Parent Project Muscular Dystrophy (PPMD)
• Cure Duchenne
• Mass 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 Book
• Matt’s NYT Article
• Matt’s Column
• What Do You Do With An Idea?