Episode 290 opens with some 2DD catch-up: Kyle finally gets an accessible room for the Rare at Sea cruise after a stressful mix-up, plus a few laughs about his missing suitcase (and making do with two pairs of underwear). The guys also give an early thank-you to Rocky, their travel agent, for going above and beyond.

The main conversation is with Joe Zinski, a data scientist working on Castleman disease research in David Fajgenbaum’s lab. Joe breaks down what “data science” actually looks like in rare disease—turning massive amounts of patient data into clear visuals the whole team can use to make decisions about what to study next and what might lead to better diagnostics or treatments.

But the real weight of the episode is Joe’s personal story: after a spinal cord injury left him quadriplegic, he had to rebuild his identity, community, and definition of a fulfilling life. Joe, Sean, and Kyle talk about grief that comes back in waves, the ongoing work of acceptance, and the idea of “not suffering twice”—not letting fear of what’s coming steal the good that’s still here.

They close with gratitude notes: Kyle thanks a tow truck driver who went the extra mile in a snowstorm, and Sean thanks an anonymous donor who covered the Rare at Sea t-shirts—an unexpected lift that meant a lot.

Links:

Center for Cytokine Storm Treatment & Laboratory (CSTL)

In recognition of Rare Disease month we are bringing you a conversation that we first published in May 2024.

In this interview, John Crowley shares how his children’s diagnosis with Pompe disease propelled him from a concerned father into the rare disease biotech world, ultimately helping develop a life-saving enzyme replacement therapy. He reflects on the journey that followed—building Amicus Therapeutics, advocating for patient-centered innovation, and witnessing his children grow into adulthood with resilience, purpose, and optimism. John is currently CEO of the Biotechnology Innovation Organization (BIO).

In this episode, Sean and Kyle count down the final days before setting sail on Rare At Sea, before diving into a candid—and frustrating—travel story. Kyle shares a cascade of challenges involving lost luggage, broken accessibility equipment, freezing temperatures, and the familiar reality of navigating a world not built for wheelchairs. The moment underscores how disability-related obstacles often stack up, turning ordinary travel into an exhausting ordeal.

The conversation then turns to an insightful interview with Hasitha Illa, a Friedreich’s ataxia advocate and creator of Life With A Hasi. Hasitha reflects on living with FA in both the U.S. and India, highlighting differences in accessibility, diagnosis, and cultural awareness. She also shares how advocacy, community, and spirituality helped her move from early frustration to acceptance and resilience.

With Rare Disease Day approaching, the episode centers on the power of connection, storytelling, and visibility—reminding listeners that progress often begins by simply sharing lived experience and continuing to move forward together.

In this episode, Kyle and Sean explore the often-blurry line between hope and denial.

They unpack how hope can be powerful when it’s grounded in reality, values, and daily action, and how it becomes harmful when it delays grieving, ignores body limits, or ties happiness to a future “if/then” outcome like a cure or treatment. Kyle and Sean reflect on how recognizing reality doesn’t mean giving up, but rather building systems that allow life to keep moving forward.

The Dudes close with an invitation for listeners to examine their own version of hope: where it’s helping them stay engaged with life, and where denial might be quietly holding them back. As always, gratitude, humor, and honesty ground the conversation—reminding us that hope rooted in values, not outcomes, is what makes it sustainable.

Episode 286 marks the start of a new season—and the 10th year—of the Two Disabled Dudes Podcast. Sean and Kyle reflect on how far the show has come, touch on what it means to keep showing up for a decade, and invite listeners into the fun by floating ideas for a listener nickname, with “Dude Squad” leading the pack. They also look ahead to upcoming community moments and reconnect with why they keep doing the work.

The heart of the episode centers on a simple but uncomfortable truth: it’s possible to be grateful and angry at the same time. Sean and Kyle talk openly about the pressure to perform gratitude, especially when others expect positivity or strength, and share everyday examples of things they appreciate deeply while still resenting the effort, loss, or frustration attached to them. From accessibility challenges to independence and daily routines, they explore how both emotions can exist without canceling each other out.

The episode closes with a reminder that gratitude doesn’t have to soften reality, and frustration doesn’t have to define character. What matters most is how we respond, how we set boundaries, and how we keep moving forward—together.

What happens when effort isn’t enough—and your body simply says no?

Kyle and Sean reflect on the moments when disability turns everyday challenges into hard limits. From navigating airports to realizing they can no longer do things they once loved, they explore the emotional, mental, and social impact of learning where the line truly is between “hard” and “impossible.”

They discuss pushing past limits and how fitness, therapy, honest friendships, and self-compassion have helped them adapt. This honest conversation dives into grief, identity, letting go of comparison, and learning to listen to your body—lessons that resonate whether you live with a disability or not.

Sean and Kyle dive into “the responsibility of achievement”—what happens when your personal wins start to carry weight for other people.

Sean shares a story from a recent all-inclusive trip to Mexico, where resort staff pointed out that the two wheelchair guys were the most consistent tippers. That sparks a conversation about why they often feel responsible to “represent” disabled folks well in situations like Uber, airlines, and travel.

From there, they unpack:

• Doing big, visible challenges (bike rides, India, the Niesen Stairway) without feeling like you owe the world the “next big thing.”
• How seeing someone else go big can give you permission to aim higher in your own way—even if your version looks totally different.
• The tension between honest vulnerability, toxic positivity, and the risk of sharing hard moments online when you don’t control how people react.

They wrap with a reminder: you don’t owe anyone perfection or constant upward momentum, but you do have influence—and you get to decide what you want to do with it. Plus, thank-you notes to a teammate who made a dry training fun and a longtime friend who opened the door to Sean’s career at Nugget Markets.

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.