Avsnitt
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In this special 300th episode of the Two Disabled Dudes Podcast, Sean and Kyle reflect on nearly 10 years of podcasting, the challenges of creating 300 episodes, and the incredible community that has formed along the way. From forgotten recordings and technical disasters to meaningful live events and lifelong friendships, they share stories from behind the scenes and revisit some of their favorite moments from the show.
The episode also features heartfelt conversations with listeners and friends from the rare disease community, including stories of recent diagnoses, finding belonging, navigating disability, and discovering connection through the podcast and the Rare at Sea cruise. More than a celebration of a milestone, this episode is a reminder of the power of community, shared experiences, and the relationships that have grown through honest conversations over the years.
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Rare at SeaRare in Common Podcast
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Sean and Kyle kick off this episode with a conversation about smart technology, AI, and the growing tension between convenience and commercialization in everyday life. That discussion sets the stage for a powerful interview with Joshua Resnikoff , founder and CEO of Sunstone Health, whose family’s rare disease journey inspired him to tackle one of healthcare’s biggest challenges: the long and frustrating diagnostic odyssey faced by rare disease families.
Josh shares how his son’s unexplained fevers and years of unanswered questions led him from biomedical research at Harvard into the world of healthcare innovation. Through Sunstone Health, Josh and his team are using AI and genome sequencing to dramatically shorten the path to diagnosis for children with rare genetic conditions—reducing a process that often takes seven years down to just weeks.
Along the way, the conversation explores the hidden incentives and shortcomings within the healthcare system, the importance of purpose-driven work, and the powerful impact that determined individuals can have when they choose to “heal the world” one piece at a time. The episode closes with reflections on gratitude, community leadership, and the next generation stepping forward to carry the mission ahead.
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AHealthcareZ
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Saknas det avsnitt?
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Part 2 continues Debbie Drell’s story, focusing on the real-life impact of caregiving, invisible illness, and the need for empathy.
Debbie highlights how much people take for granted—walking short distances, being in crowds, traveling, or getting through a full day without rest. For her sister Alex, who lives with multiple rare conditions including pulmonary hypertension, these everyday activities can be exhausting or even life-threatening.
She also shares the emotional toll of caregiving—living with constant uncertainty and the fear of “is this it?”—while still choosing to show up with love and presence. Her journey has shaped her career in advocacy and deepened her belief in the power of community.
A key theme is how illness exposes the truth in relationships. Debbie opens up about the pain of judgment and stigma, especially with invisible conditions, and how a lack of understanding can lead to harmful situations—even within families.
The episode lands on a simple but powerful message:
Lead with empathyListen before assumingAdapt to others instead of forcing expectationsDebbie defines true allyship as being patient, curious, and willing to learn.
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NORDPulmonary Hypertension Association
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In this first part of the conversation, Sean and Kyle sit down with longtime friend and rare disease advocate Debbie Drell, whose connection to the space runs deep—both professionally and personally.
Debbie shares the story of her sister Alex, who was diagnosed with pulmonary hypertension decades ago and given just two years to live—yet is still fighting today. As both a caregiver and advocate, Debbie offers a raw look into the realities of living with (and alongside) an invisible, life-threatening condition.
The conversation dives into the often-missed challenges of invisible illness—how someone can “look fine” while their body is under constant strain, and how misunderstanding from others can add an extra layer of exhaustion. Through personal stories—including close calls, public confrontations, and meaningful moments of empathy—Debbie highlights the importance of slowing down, paying attention, and choosing compassion over assumption.
This episode sets the stage for a deeper discussion on caregiving, advocacy, and the quiet strength it takes to navigate a world that doesn’t always understand what it can’t see. Watch for episode 298 for the second part!
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NORDPulmonary Hypertension Association
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Episode 296 explores connection, resilience, and the power of meeting people where they are—starting with a story about a young man with Friedreich’s ataxia (FA) who courageously continues cycling even after a crash.
The episode’s main conversation features Dr. Eric Mitchell and his son Dylan, who share their work with Neurodiversity Consultants and their strengths-based, relationship-driven approach to supporting neurodivergent individuals. Dylan offers a powerful personal perspective on growing up on the spectrum, highlighting both challenges (like social connection and emotional regulation) and the tools that helped him thrive. Dylan talks about a challenge many of his clients face: the growing lack of “tertiary spaces” for social connection and how that disproportionately impacts neurodivergent people. The episode closes with reflections on purpose, gratitude, and the importance of creating meaningful opportunities for community.
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Bowling Alone
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Another frustrating hotel experience opens the episode, but the real conversation centers on what it actually means to “never give up.”
After dealing with a series of accessibility failures—miscommunication, poor accommodations, and a lack of understanding—Kyle and Sean shift into a bigger idea: persistence isn’t just about pushing harder.
Using the story of a breakthrough Friedreich’s ataxia (FA) drug approval, they explore how real progress often requires a different approach—not more force. Whether it’s navigating healthcare, training in the gym, or recovering from setbacks, they highlight the importance of adapting, rethinking the path, and letting go of ego, pride, or outdated expectations.
The takeaway is simple but powerful: don’t give up on the goal—but be willing to change how you get there.
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This episode starts with a classic 2DD moment—a wild but relatable story about Kyle discovering he had a piece of road stuck in his knee for a year and a half. It’s funny, a little absurd, and quickly turns into something more meaningful: how often we ignore small issues—physical or otherwise—and just learn to live with them instead of addressing them.
From there, the conversation shifts into a deeper topic: finding your people—and just as importantly, recognizing that there’s no single “right” way to do that. Sean and Kyle reflect on their very different journeys with Friedreich’s ataxia—Sean jumping into connection early, while Kyle kept his distance for nearly a decade. That contrast sets the tone for an honest discussion about timing, identity, fear, and readiness when it comes to community.
They unpack the real value of connection—education, emotional relief, and the kind of understanding that doesn’t require explanation. At the same time, they challenge the idea that everyone needs to dive into a disease-specific community right away (or at all). Avoidance isn’t weakness—it can be self-protection. Whether it’s fear of the future, comparison, identity struggles, or simply not being ready, they make it clear: you get to choose how you engage, when you engage, and who you engage with.
The takeaway is simple but powerful: there’s no wrong way to navigate this life. You can build a tight-knit community, keep your circle broad, or take your time figuring it out. You can connect deeply—or not at all—for now. What matters is that it works for you in the season you’re in.
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2DD LIVE April 12, 11am Pacific/2pm Eastern - Join Us!
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In this special Rare Disease Day conversation, The Dudes partner with Jett Foundation to moderate a thoughtful panel on advocating for care needs, independence, and life with disability. Joined by Jake, Ashley, Charlie, and Xavier, the discussion highlights the many forms advocacy can take—from managing care and navigating insurance to simply showing up in the world, pursuing work, and building a meaningful life on your own terms.
Each panelist brings a unique perspective, sharing honest reflections about college, caregiving, careers, medical systems, and the ongoing balance between needing help and wanting independence. What comes through clearly is that advocacy is not one-size-fits-all. Sometimes it looks like hiring the right support, sometimes it means pushing back on a doctor or insurer, and sometimes it’s the quiet determination to keep moving forward even when life feels uncertain.
The episode is also grounded in heart, vulnerability, and community. Sean offers a moving tribute to the late Kyle Cox, honoring his belief in ability over limitation, while the panelists leave listeners with practical and encouraging advice: embrace the overwhelm, document the process, never accept the first no, and keep building independence one step at a time. It’s a powerful conversation about resilience, self-advocacy, and creating a life that is bigger than diagnosis.
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What starts with airport chaos and accessibility frustrations turns into a meaningful conversation about what it really takes to move rare disease research forward.
Sean and Kyle kick things off with travel stories from their trip to Rare At Sea, including misplaced mobility equipment, inaccessible hotel setups, and the all-too-common surprises that come with traveling disabled. Then they’re joined by Derek Ansel, who pulls back the curtain on the world of clinical research—breaking down what CROs do, why diagnosis matters so much, and how patients, providers, and industry all play a role in bringing treatments closer to reality.
It’s equal parts relatable, informative, and encouraging—mixing everyday disability experiences with a behind-the-scenes look at the systems, strategy, and people helping drive progress in rare disease.
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In this episode, Sean shares the bold details behind his upcoming climb of the Niesen Stairway in Switzerland—the world’s longest staircase with 11,674 steps, the equivalent of climbing the steps of the world’s tallest building nearly four times.
Because the stairs are a private emergency access route alongside a mountain tram, Sean and his team will attempt the ascent overnight in the dark, navigating uneven steps, changing terrain, and high elevation. He talks about the intense logistics, safety planning, and 26-week training process preparing him to take on the challenge while living with Friedreich’s ataxia (FA).
The climb is also a fundraiser for his nonprofit, De:terminence, with a goal of raising $50,000 to help people with disabilities pursue life-changing physical achievements. With a team of 11 supporters, careful strategy, and a powerful purpose, Sean is setting out to prove that disability doesn’t eliminate adventure—it redefines it.
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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)
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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).
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
- Visa fler
