Two Disabled Dudes

294 - Finding Your People Without Losing Yourself

Mon, 30 Mar 2026 03:01:00 -0400

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.

LINKS

2DD LIVE April 12, 11am Pacific/2pm Eastern - Join Us!

293 - Rare Disease Day: This is What Advocacy Looks Like

Mon, 23 Mar 2026 09:00:00 -0400

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.

292 - The Hidden System Behind Rare Disease Treatments

Mon, 16 Mar 2026 03:01:00 -0400

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.

291 - Taking on the World’s Longest Stairway

Mon, 09 Mar 2026 03:01:00 -0400

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.

290 - Don’t Suffer Twice

Mon, 02 Mar 2026 03:01:00 -0400

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)

289 - Re-release: From Dad to Advocate to CEO

Mon, 23 Feb 2026 03:01:00 -0400

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).

288 - Choosing to Smile Even When it's Hard

Mon, 16 Feb 2026 03:01:00 -0400

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.

287 - The Fine Line Between Hope and Denial

Mon, 09 Feb 2026 03:01:00 -0400

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.

286 - Grateful. Angry. Both.

Mon, 02 Feb 2026 03:01:00 -0400

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.

285 - Knowing When to Stop: Disability, Limits, and Letting Go

Mon, 22 Dec 2025 03:01:00 -0400

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.

284 - What Achievement Asks Of Us

Tue, 09 Dec 2025 03:01:00 -0400

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.

283 - Disability Advocacy in Work and Travel

Wed, 12 Nov 2025 03:01:00 -0400

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.

282 - Adapt the Plan, Not the Dream

Sat, 25 Oct 2025 03:00:00 -0400

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.

281 - Pixels With Purpose - Ben Forred

Tue, 07 Oct 2025 03:01:00 -0400

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.

280 - Is Accessibility Really About Access… or Attitude?

Tue, 16 Sep 2025 03:01:00 -0400

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.

279 - 2DD LIVE: The Power of Owning Your Disability

Fri, 22 Aug 2025 03:01:00 -0400

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.

278 - Mic Trouble, a Gift Card, and Streaking on a Cruise Ship

Wed, 13 Aug 2025 03:01:00 -0400

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.

277 - Season Finale - Gratitude, Growth, and Dog Poop DNA

Mon, 26 May 2025 03:01:00 -0400

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

276 - World Domination…With a Twist of Kindness

Mon, 19 May 2025 03:01:00 -0400

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

275 - A Soft Blanket and a Bold Mission

Mon, 12 May 2025 03:01:00 -0400

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

274 - When Compassion Leads the Play: Inside Uplifting Athletes

Mon, 05 May 2025 03:01:00 -0400

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

273 - Letting Go of One Dream to Discover a Thousand More

Mon, 28 Apr 2025 03:01:00 -0400

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.

272 - Bridging Worlds: Empowering Patients and Transforming Trials

Mon, 21 Apr 2025 03:01:00 -0400

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

271 - Rae of Hope: The Power of Inclusion

Mon, 14 Apr 2025 03:01:00 -0400

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:

270 - RDD 2025 with Jett Foundation: "Disability Doesn’t Define Us!"

Mon, 07 Apr 2025 03:01:00 -0400

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)

269 - Red Pandas, Wheelchairs, and the Courage to Say “This Sucks”

Mon, 31 Mar 2025 03:01:00 -0400

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

268 - Energy Management: How Not to Become a Pile of Poop by 6 PM

Mon, 24 Mar 2025 03:01:00 -0400

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

267 - Life After Diagnosis: The Power of Humor, Resilience, and Letting Go

Mon, 17 Mar 2025 03:01:00 -0400

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

266 - Spreading the Word, Saving Lives: Key Insights from ACD

Mon, 10 Mar 2025 03:01:00 -0400

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:

265 - Holding Onto Hope Without Letting Go of Today

Mon, 03 Mar 2025 03:01:00 -0400

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

264 - A Mother's Journey with CTNNB1 Syndrome and her Family's Path to Inclusivity

Mon, 24 Feb 2025 03:01:00 -0400

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

263 - The Surprising Truth About Independence

Mon, 17 Feb 2025 03:01:00 -0400

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

262 - Do Our Resolutions Reveal Our Age?

Mon, 10 Feb 2025 03:01:00 -0400

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

261 - Season 13 Begins: Travel, Community, & Vacation Prep

Mon, 03 Feb 2025 03:01:00 -0400

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

260 - Our Perceptions of Disability Were Wrong

Mon, 09 Dec 2024 03:00:00 -0400

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: thedudes@twodisableddudes.com or comment on Instagram or Facebook.

259 - If Sean & Kyle Won The Election

Mon, 11 Nov 2024 03:00:00 -0400

In this thought-provoking episode, Sean and Kyle discuss what laws they would institute if given ultimate power. They each introduce three laws that would benefit individuals with disabilities and promote greater understanding among all citizens.

These ideas spark a powerful reflection on the need for empathy, inclusivity, and social responsibility.

Listeners are encouraged to join the conversation by sharing their own "laws for a day.”

Also in this episode:

Sean and Kyle's experience at the FARA/CHOP FA Symposium
Kyle's new van!
Thank you to Mark and Chavez

258 - Navigating Setbacks: 4 Tips for Gaining Momentum

Mon, 14 Oct 2024 03:01:00 -0400

In this candid and deeply personal episode, Sean and Kyle tackle the emotional and mental struggles that come with setbacks—whether from injury, burnout, or life's unexpected challenges. Sean opens up about his difficult recovery journey after a recent injury, where even though surgery wasn't required, the road to getting back on track has been much longer and tougher than expected. With vulnerability and honesty, they explore the ripple effects of physical limitations on emotional well-being, offering insights on how interconnected our mental, emotional, and physical states truly are.

Listeners will appreciate Sean's transparency as he shares the difficulty of regaining momentum after months away from his usual routine, like going to the gym. Together, they discuss practical ways to pull yourself out of a dark place—whether it’s setting small goals, staying accountable to someone, or simply taking those first small steps back toward movement and self-care. They highlight the importance of being kind to yourself during the process and recognizing that it's okay to not have it all figured out. This episode is a reminder that setbacks are a part of life, and the path to healing isn’t about finding a quick fix, but a series of steps that help you move forward.

Whether you’re recovering from an injury, dealing with mental burnout, or just looking for ways to break through a rough patch, Sean and Kyle’s heartfelt conversation is packed with relatable moments and practical advice. Tune in for an inspiring and honest discussion on how to navigate life’s challenges and keep moving forward, even when progress feels slow.

Also in this episode:

After 10 years, Kyle got a credit card again.
Thank you notes: Sean - City of West Sacramento and ride share service Via; Kyle - Woman in the TSA line that lifted his bag onto the belt.

257 - Journey to the World's Highest Road, Part 2

Mon, 09 Sep 2024 07:01:00 -0400

In this episode, we recount a challenging experience during our cycling trip in the Himalayas. Sean shares the story of his accident, where he was forced to brake hard on the trike, causing it to flip and throwing him to the ground. The impact left him with severe pain in his shoulder and hip, making it difficult to breathe initially and leaving him unable to continue the ride. Despite his initial hope that he might recover quickly, the pain worsened, and he realized he needed to seek medical attention back in the United States.

With the help of his teammates Colin and Colin's daughter, Alexis, Sean navigated the arduous journey back home, dealing with intense pain throughout. Upon arriving in the U.S., Sean visited the ER to begin his recovery process. Meanwhile, the rest of the team continued the ride, facing grueling climbs and extreme conditions. The episode highlights the resilience and determination of both Sean and the team, underscoring the physical and emotional challenges of undertaking such a demanding journey.

This trip would not have happened without these team sponsors: Biogen, Lexeo Therapeutics, Cure FA Foundation, Masonry Builders, Nugget Markets, and The Avery Family Foundation. Gear provided by: Catrike, Gorewear, and Zeiss Camera Lenses.

The episode ends with a discussion about what's next. Kyle will focus on development of the rideATAXIA fundraising program. Sean will climb the world's longest staircase in Switzerland next year.

256 - Journey to the World’s Highest Road, Part 1

Mon, 05 Aug 2024 07:01:00 -0400

This episode kicks off Season 12: An abbreviated season. After eight years of consistent publishing, the Dudes are scaling back for the rest of 2024 in order to fine tune the show, focus energy elsewhere, and just catch up on life. This season will consist of five episodes, one for each month through December. Regular, weekly episodes will resume in February 2025 with Season 13.

The reflection of their trip to India will span over two episodes. In this episode (pt.1), Sean and Kyle reflect on their recent trip to India, describing both the challenges and highlights of their adventure. They mention the initial stress of the journey, the support they received from sponsors and donors, and the excitement and admiration from friends and family.

The episode details their activities, including meeting researchers at the All India Institute for Medical Sciences (AIIMS) and connecting with the FA patient community of India. They recount the logistical difficulties they faced, such as getting their trikes through Customs and navigating airport security with their group, including the language barriers and misunderstandings.

Upon arriving in Leh, they acclimated to the high altitude, explored local culture, and prepared their Catrikes for the upcoming trek. The Dudes share humorous and stressful moments, such as the infamous white scarfs, dealing with intense sun exposure, and adapting to local cuisine.

Finally, they describe the start of their bike ride, marked by a traditional dance and music presentation by local performers, emphasizing the support and encouragement they received throughout their journey.

Be sure to catch episode 257 for the rest of the story.

255 - Season Finale - We’re Riding the World’s Highest Road

Mon, 27 May 2024 07:01:00 -0400

In the final episode of season 11, The Dudes discuss their major upcoming event: a challenging 200-mile bike ride in the Himalayas - to the top of the world’s highest paved road - over 19,000’. They talk about the logistics, the elevation challenges, and their preparation, including the use of altitude training masks. They also address concerns about food, accessibility, and health, highlighting the need to adapt to unforeseen circumstances.

Sean and Kyle express their excitement and some nervousness about the trip, emphasizing the importance of taking on such challenges despite the risks. The Dudes reflect on the support and inspiration they find within the rare disease community, underscoring the shared goal of pushing boundaries and raising awareness.

Also in this episode:

An update on Kyle's adaptive van situation featuring a note from Terry in Australia.
Rare Resilience: Onno Faber
Thank you notes: The Kindness of strangers and Team FARA supporters

Links and resources:

More about Sean and Kyle's trip.
The route map.
Donate to Team FARA Himalayas.
Visit our segment partner: #RAREis

254 - From Dad to Advocate to CEO: John Crowley's Continued Commitment

Mon, 20 May 2024 07:01:00 -0400

This episode (254) features an interview with John Crowley, who shares his journey into the rare disease space. John's involvement started in 1998 when his daughter Megan was diagnosed with Pompe disease, a rare form of muscular dystrophy. Determined to find a cure, John and his family embarked on a journey of research and entrepreneurship, ultimately founding a biotech company that developed a life-saving enzyme therapy for Pompe disease.

Despite initial challenges, including financial struggles and personal sacrifices, John's perseverance led to successful treatments for Megan and other patients. Today, Megan and her brother Patrick are thriving adults, actively contributing to society despite their condition.

John's commitment to patient-centered care extends beyond his personal journey. As CEO of Amicus Therapeutics and now as CEO of BIO, he continues to advocate for rare disease patients, emphasizing the importance of universal access to treatment and addressing barriers to healthcare.

Throughout the interview, John's resilience and optimism shine through, serving as an inspiration for others facing similar challenges. His dedication to making a difference in the lives of patients and his unwavering determination highlight the transformative power of hope and perseverance in the face of adversity.

Also in this episode:

Sean plans to burn the clothes he wears on the climb up the world's highest road
Rare Resilience: Kelly Barendt
Thank you notes: Bio News and the FARA Staff

Links and resources:

John's previous episode: 144 - DD pt2: Do good and...with John Crowley
BIO
Make a Wish Foundation
Visit our segment partner: #RAREis

253 - Uplifting Athletes: Harnessing the Power of Sport for Rare Diseases

Mon, 13 May 2024 07:01:00 -0400

Rob Long shares his journey with Uplifting Athletes, an organization dedicated to leveraging the influence of athletes to support those impacted by rare diseases. Rob and Brett Brackett took over leadership in 2018, revitalizing the organization's mission. They have several powerful initiatives including The Young Investigator Draft, Lift for Life, Leadership Development, and Uplifting Experiences.

Rob reflects on the organization's impact, sharing a touching story of how a seed grant recipient's research saved his life. This personal connection underscores the profound ripple effect of Uplifting Athletes' work.

Also in this episode:

Rare Resilience: Jose Flores, Motivational Speaker
Thank you notes: John the mailman and the Masterclass app

Links and resources:

Rob's previous episode: 070
Episode with Rob's Rare Resilience segment
Jose Flores social media: Instagram | Facebook | LinkedIn
Visit our segment partner: #RAREis

252 - NFL Plans Crushed, His Response Changes Lives

Mon, 06 May 2024 07:01:00 -0400

In episode 252, Rob Long, executive director of Uplifting Athletes, revisits his rare disease journey. He recounts his college football days at Syracuse University and the abrupt onset of symptoms during his senior year. Rob shares the initial confusion and fear surrounding his diagnosis of a brain tumor, leading to surgery and a challenging recovery process. He reflects on the emotional toll of accepting his diagnosis and navigating through post-traumatic stress disorder (PTSD) in the years following.

Also in this episode:

Kyle and Sean chat about squishy PB & J
Rare Resilience: Nathan Peck, CEO of Cure VCP Disease

Links and resources:

Route map for the Dude's ride in India
Rob's previous full episode
Episode with Rob's Rare Resilience segment
Visit our segment partner: #RAREis

251 - From Canes to Canines: Linda's Path to Mobility

Mon, 29 Apr 2024 07:01:00 -0400

In episode 251 we welcome our dear friend Linda Snyder! Linda shares her personal journey living with a rare genetic type of ataxia and discusses how she discovered the benefits of having a mobility service dog named Cedric. She talks about the rigorous process of applying for a service dog, the extensive training Cedric underwent, and the various tasks he assists her with, including laundry!

Additionally, Linda shares her involvement in the rare disease community, particularly her role in co-founding the Nebraska Ataxia (Now called Ataxia Connection), a support group that has grown significantly over the years. She discusses the impact of connecting with others who share similar experiences and the importance of supporting one another.

Also in this episode:

Kyle cheats Target out of 15 cents
Rare Resilience: Rob Long, Executive Director of Uplifting Athletes
Thank you notes: Starbucks baristas & Pat O'Connel

Links and resources:

Canine Partners for Life
Visit our segment partner: #RAREis

250 - Thriving with Duchenne - Rare Disease Day with Jett Foundation

Mon, 22 Apr 2024 07:01:00 -0400

Our friends at Jett Foundation invited us into their community once again for a conversation with 5 panelists on Rare Disease Day.

We were honored to moderate the discussion with these friends:

Race Martinez - Architecture Student, living with Duchenne
Kris Napper - Graphic Designer/Illustrator, Business Owner, living with SMA
Chris Schlechty - Software Engineer, Jett Foundation Board of Directors, living with Limb-girdle
Colin Werth - IT Specialist, International Traveler, living with Duchenne
Amanda Becker - Mom to individual living with Duchenne

The conversation covered topics such as adaptive driving, college transitions, building a career, volunteering to enrich the community, and entrepreneurship. All of this helped highlight the strength and determination within the rare disease community.

We hope you are as encouraged by this conversation as we are.

Links and Resources:

249 - 20 Years in the Making: REATA's Story of Skyclarys

Mon, 15 Apr 2024 07:01:00 -0400

This episode delves into the journey of Skyclarys, the first FDA-approved treatment for Friedreich's ataxia (FA), a rare genetic disorder. The discussion features Dr. Colin Meyer, former executive at Reata Pharmaceuticals, who shares his experiences from the inception of Reata to the acquisition by Biogen.

The conversation offers a compelling narrative of resilience, innovation, and collaboration in the pursuit of groundbreaking therapies for rare diseases. Colin's reflections provide valuable perspectives on the challenges and rewards of drug development, as well as the transformative potential of scientific breakthroughs in improving patient outcomes.

Also in this episode:

Sean visits Golden 1 Arena
Newsworthy: Athlete With Cerebral Palsy Finishes The Barcelona Marathon
Thank you notes: Kyle's friends Blake & Dan and Sean's friend Taylor

Links and resources:

248 - Everyone Holds a Piece w/ FARA CEO, Jen Farmer

Mon, 08 Apr 2024 07:01:00 -0400

In this insightful interview with Jen Farmer, CEO of the Friedreich's Ataxia Research Alliance (FARA), we explore the evolving landscape of rare disease research and the journey towards treatments for Friedreich's ataxia (FA). Jen shares her experiences and challenges as a leader in the field, emphasizing the importance of community involvement and collaboration.

Also in this episode:

Sean travels to Vegas with a group of 30.
Newsworthy: Viral ad challenges stereotypes about Down syndrome: ‘Assume I can drink a margarita’
Thank you notes: Jakob in Austria and Kelly at The Venetian.

Links and resources:

Jen's Previous episodes: DD pt4: Why Sean Baumstark is Banned From Clinical Trials | How a Mom Launched the First Drug Approval in FA
Newsworthy music courtesy of Zapsplat.com

247 - Tenacity and the Power of Persistence

Mon, 01 Apr 2024 07:01:00 -0400

In this episode, Sean and Kyle discuss the importance of maintaining discipline and focus, particularly in the face of distractions and competing priorities.

The conversation delves into the concept of knowing what one wants and being clear about goals to stay motivated and driven. They reflect on the significance of surrounding oneself with supportive people who encourage and uplift in the pursuit of those goals.

Also in this episode:

Kyle exercises a principle he learned in a past 2DD episode
Newsworthy - International Day for Social Inclusion & Official Release of the Overjoyed Accessible Controller on the Microsoft Store!
Thank you notes: Kyle's bike mechanic and the Vertiball massager

Links and resources:

246 - Empowering Accessibility, One Review at a Time

Mon, 25 Mar 2024 07:01:00 -0400

In this episode, we discuss the groundbreaking work of Roll Mobility, a platform revolutionizing accessibility for people with disabilities. Roll Mobility functions as a Yelp-like app, providing users with vital information on the accessibility of restaurants, destinations, and sightseeing locations. By ranking establishments based on their accessibility features, Roll Mobility empowers individuals to plan ahead and ensure a smooth experience without unexpected barriers.

Our guests, and Roll Co-Founders, Rachel Zoller & Joe Foster, delve into the personal connections driving Roll Mobility's mission, highlighting the challenges faced by individuals with disabilities in navigating public spaces. Rachel emphasizes the importance of community-driven data in shaping the app's functionality.

The conversation also delves into the broader societal implications of accessibility, emphasizing the benefits that inclusive design offers everyone. By advocating for accessibility, Roll Mobility aims to foster social awareness and create a more inclusive society.

Listeners are encouraged to support Roll Mobility by downloading the app, sharing it with others, and contributing reviews to help expand its reach. Additionally, if you’re in the Denver area, we encourage you to consider attending an event hosted by Roll Mobility and Dateability, inviting Denver residents to join the Denver Pub Crawl Spring Fling April 27, 2024 to celebrate inclusion and accessibility in their community.

Also in this episode:

The airline snapped the arm off Kyle's wheelchair
Newsworthy - Secretary Buttigieg Announces Proposed Rule to Ensure Passengers Who Use Wheelchairs Can Fly with Dignity
Thank you notes: Michelle and her glass art, and Dawn the personable travel agent from Altour

Links and resources:

RollMobility Instagram
Denver Spring Fling Pub Crawl hosted by Roll and Dateability - April 27
Sign open letter to improve accessibility on Airlines (GlobalGenes)
Newsworthy music courtesy of Zapsplat.com

245 - Settle or Soar? Embracing Uncertainty

Mon, 18 Mar 2024 07:01:00 -0400

The Dudes talk about life changes and the significance of pursuing growth and opportunities, even in the face of uncertainty. Reflecting on personal anecdotes and advice, they underscore the value of acceptance, adaptation, and gratitude in embracing life's journey.

Also in his episode:

Kyle's most recent challenging experience with airline travel
Newsworthy - 'Go On, Be Brave' documentary captures perseverance in face of ALS
Thank you notes: Kyle's driving instructor and Sean's friend in Miami

Links and resources:

244 - Change & Consistency with Progressive Disease

Mon, 11 Mar 2024 08:01:00 -0400

In Episode 244, the Dudes delve into the topic of change and consistency, particularly in the context of living with progressive diseases like Friedreich's ataxia (FA). They discuss the challenges of navigating constant change, setting expectations, and managing the desire for both fast and slow change.

Also in this episode:

Emergency haircuts and curbcut confusion
Newsworthy: FOX 5 Las Vegas Surprise Squad
Thank you notes: A vacation buddy and fake plants

Links and resources:

243 - EveryCure and the Power of Collaboration w/ Dr. David Fajgenbaum

Mon, 04 Mar 2024 08:01:00 -0400

In this episode, Dr. David Fajgenbaum shares his journey of discovering a drug that saved his own life. He emphasizes the importance of repurposing existing drugs for new uses and highlights the potential of artificial intelligence in identifying such opportunities.

Dr. Fajgenbaum discusses his nonprofit organization, EveryCure, which aims to unlock new uses for existing FDA-approved drugs. The organization utilizes biomedical knowledge and AI algorithms to analyze connections between drugs, genes, proteins, pathways, and diseases. The goal is to find potential treatments for various diseases by evaluating existing drugs.

VIEW THIS INTERVIEW ON YOUTUBE

Also in this episode:

Sean abandons his principles
Newsworthy: Here's what the starbucks of the future looks like. Starbucks has opened its first cafe designed to give customers with disabilities a more accessible store experience.
Thank you notes: Make a Hole Stranger and Gas Station Jeep Guy

Links and Resources:

242 - Dave Lynch: 27 Years, 700+ Patients, and the First Treatment

Mon, 26 Feb 2024 08:01:00 -0400

Dave (Dr. Lynch), a seasoned clinician and researcher specializing in Friedreich's ataxia (FA), sheds light on his nearly three-decade journey at the forefront of FA care. Throughout the conversation, Dave emphasizes the indispensable role of patient participation in research, underscoring the collaborative spirit driving advancements in FA drug development.

Also in this episode:

Sean's Sleep-talking escapades.
Kyle Finally took his road test for his driver's license.
Newsworthy: Light Up For Rare comes to a monument near you!

Links and Resources:

241 - Feeling Helpless? Here Are 4 Ways To Help

Mon, 19 Feb 2024 08:01:00 -0400

For Rare Disease Patients, the drug development process can feel huge and overwhelming. It seems like everyone has a role to play; Doctors, researchers, advocacy organizations, pharma industry...we can see how they all fit in the process. What about the patient's role? Listen as The Dudes discuss 4 of the many ways patients can have an impact.

Also in this episode:

Ever received a mysterious text from an unknown number?
Kyle talks about receiving a letter regarding his DMV situation and the challenges he faces in navigating bureaucratic systems.
Newsworthy from Esquire: Four Years After a Crash Left Him Paralyzed, BMX Star Paul Basagoitia Enjoys Riding More Than Ever
Thank you notes: Sean - A curious coworker. Kyle - Mike and Diane Bryant (Dad and Mom)

Links and Resources:

240 - Adapting to Life's Curveballs

Mon, 12 Feb 2024 08:01:00 -0400

Adapting to changes is a big part of life for everyone. Listen as The Dudes discuss their approach to adapting.

In this episode:

Kyle uses a voided ID to get past TSA on his way to North Carolina and back.
Newsworthy from Instagram: Young man paralyzed from the shoulders down after a spinal cord injury in 2020
The Dudes get into a discussion about adaptation strategies for living with disabilities, emphasizing the importance of planning ahead and being flexible. They also reflect on their upcoming changes to the podcast production schedule, aiming for a more manageable approach.
Thank you notes: Sean: Football season's effect on crowds at the gym. Kyle's friend Joy, for planning an awesome game day party

Links and Resources:

Newsworthy music courtesy of Zapsplat.com

239 - Season Premier - Are You a Doer or a Talker?

Mon, 05 Feb 2024 08:01:00 -0400

Listener Brian lets the Dudes know that Kyle has in fact been driving illegally for 10 years. Does Kyle have a plan to address this dilema?

In the Season 11 premiere, Kyle and Sean dive into the challenges and triumphs of pursuing dreams, overcoming fears, and embracing new opportunities. The Dudes also discuss the power of setting goals, the fear of failure, and the importance of discipline in achieving success. With inspiring stories and candid reflections, this episode offers listeners a blend of motivation, encouragement, and real-life insights.

Links and resources:

238 - Season Finale - The Dynamics of Friendship

Mon, 27 Nov 2023 08:01:00 -0400

In episode 238, The Dudes delve into the theme of friendship, highlighting the significance of chosen family and exploring the dynamics of their own unique bond. They draw inspiration from questions curated by MindPath Health, leading to an unscripted and genuine conversation. From childhood influences like movies to bucket list aspirations, The Dudes share personal stories, providing insight into their lives. The episode also touches on life's challenges, frustrations, and coping mechanisms, offering a candid look. In the spirit of National Family Caregivers Month, Sean and Kyle discuss how they prefer to receive care, emphasizing the importance of understanding and genuine support. The episode weaves together laughter, reflection, and wisdom, creating a connection with listeners through shared experiences and open conversation.

The Dudes will be back with new episodes in February. In the meantime, check out past episodes.

Links and Resources

Mindpath Health - 80 fun questions to ask your friends to get to know them on a deeper level

237 - The Vital Role of Caregivers in Rare Disease Advocacy

Mon, 20 Nov 2023 08:01:00 -0400

We are thrilled to have Effie Parks and Daniel DeFabio in this powerful episode! Together, we discuss the pivotal role of the caregiver’s voice in the realm of healthcare, particularly in the context of rare disease. Our dialogue revolves around the essential role of caregivers, whether they are parents, aunts, uncles, or other family members, in advocating for those who may not have the ability to communicate at all, as often seen in the case of children with rare diseases.

Effie & Daniel help us understand why the distinction between patient and caregiver voice is crucial. Caregivers often become the primary advocates for individuals, especially children, who may have limited communication abilities, so caregivers must be included in the entire care process.

Our conversation delves into the challenges faced by caregivers, particularly in the context of rare diseases, where caregiving responsibilities extend beyond traditional roles. Effie & Daniel touch on the complexities of balancing the roles of a parent and a caregiver. They share personal insights into the challenges of finding balance between urgent caregiving needs and the desire to engage in typical parenting activities. Hear us discuss the emotional and mental toll on caregivers and stress the importance of acknowledging both aspects of their identity.

Links and Resources:

236 - A Mom's Perspective on Devastation and Gratitude

Mon, 13 Nov 2023 08:01:00 -0400

Sean and Kyle engage in a heartfelt conversation with Caley Caroll, a mother, caregiver, and fierce advocate for her son Whitten John and his health challenges. Whitten John was diagnosed with Diabetes Insipidus and Langerhans Cell Histiocytosis, two rare diseases. Caley shares the emotional journey of receiving the diagnoses, the difficulties of caregiving, and the impact on her family. She recounts the challenges of treatments, including chemotherapy, and the importance of gratitude throughout the process. The conversation touches on the effects on her other children and the transformation of relationships within the family. Caley emphasizes the need for intuition and advocacy in navigating the complexities of healthcare. Despite the hardships, there's a sense of gratitude and celebration in the present.

Links & Resources

This episode brought to you in part by Reata Pharmaceuticals.

Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

235 - Addressing the Epidemic of Wheelchair Damage by Airlines

Mon, 06 Nov 2023 07:01:00 -0400

Zach Wichter joins us to discuss the massive, yet not-so-commonly known incidents of damage to mobility devices caused by airlines. Zach is a consumer travel reporter for USA Today and focuses much of his writing on air travel specifically. Zach discusses his project where he has been tracking incidents of airlines damaging mobility devices throughout 2023, working to put names and faces, through storytelling, to the 10,000-15,000 devices that airlines damage each year. He highlights the significant impact of such damage on disabled travelers and their families, emphasizing the human aspect behind the statistics. We discuss potential solutions, efforts of improvement being made, and of course, the ongoing need for advocating in order to keep the ball rolling towards improvement.

Zach’s dedication to sharing these stories and raising awareness for this issue is evident throughout the episode and he encourages listeners to share their stories and contribute to the ongoing dialogue about accessibility in air travel.

Links & Resources

Read one of Zach's stories and submit your own: Flyer 'just in shock' after watching wheelchair fall off baggage belt from a United flight

This episode brought to you in part by Reata Pharmaceuticals.

234 - World Duchenne Awareness Day - Jett Foundation

Wed, 01 Nov 2023 07:01:00 -0400

The Dudes recently had the privilege to host a virtual panel for Jett Foundation's celebration of World Duchenne Awareness Day 2023. This panel includes Patients, Caregivers, and Medical Professionals. Some of the topics discussed include:

Understanding Manifesting Carriers
Common Misconceptions About Female Carriers
Challenges of Transitioning from Pediatric to Adult Care
Geographic Challenges and Access to Care
The Role of Virtual Visits
Tips for Navigating Healthcare Challenges

We are continuously impressed with the DMD Community's drive to help each other navigate challenging situations. Thank you, Jett Foundation, for allowing us to be part of this conversation.

Links & Resources

Find out More: Jett Foundation

233 - Should Disability Heighten Our Sense of Responsibility?

Mon, 30 Oct 2023 07:01:00 -0400

In this episode, Kyle and Sean discuss various incidents that prompt them to contemplate the responsibilities and expectations within the disabled community. The dudes discuss whether people with disabilities sometimes misuse their rights or privileges, particularly in situations like pre-boarding on flights. They explore that every right implies a responsibility and how some actions might reflect poorly on the entire community.

Links & Resources

Sean's Article: Living With A Disability Heightens My Sense Of Responsibility
Register Today: Friedreich's ataxia News Virtual Event, Nov 1
Check it out: Aquila Fitness

This episode brought to you in part by Reata Pharmaceuticals.

232 - Can Rare Disease Create Heroes?

Mon, 23 Oct 2023 07:01:00 -0400

Episode 232 welcomes Matt LaFleur who shares his journey as a rare disease patient with Friedreich's ataxia (FA). Matt talks about how he transitioned from viewing himself as a victim of FA to seeing himself as a hero in his own story. He describes the impact of the diagnosis as an "inciting event" and highlights how the hero's journey is not just a linear path but a cyclical one. Matt emphasizes the importance of taking responsibility and finding little victories along the way, despite the ongoing presence of FA. The discussion touches on various aspects of life with a rare disease, relationships, and personal growth. Matt also shares his experience of presenting at the FA Symposium and how he and his co-presenters used mythical characters to relate their topics to the hero's journey concept. The episode offers a unique perspective on finding inspiration and resilience in the face of adversity.

Links & Resources

Register Today: Friedreich's ataxia News Virtual Event, Nov 1
Read: Matt's Column
Watch: FARA FA Symposium Recordings

This episode brought to you in part by Reata Pharmaceuticals.

231 - Speak Up, Stand Out: Silence is Not Advocacy

Mon, 16 Oct 2023 07:01:00 -0400

In this conversation, Sean and Kyle discuss the concept of advocacy and its various forms. They reflect on their experiences with advocacy, from meeting with legislators for rare disease-related issues to everyday interactions. They emphasize the importance of not staying silent and making one's voice heard, whether it's through legislative meetings, social media, or personal interactions. They also acknowledge the power of raising awareness and challenging perceptions of disability by expressing yourself in whatever way you choose.

Links & Resources

Register Today: Friedreich's ataxia News Virtual Event, Nov 1
Watch: Joe Sooch's YouTube Channel

This episode brought to you in part by Reata Pharmaceuticals.

230 - Navigating Mental Illness: Parent Stories

Mon, 09 Oct 2023 07:01:00 -0400

In this interview, podcast hosts Bill Nowicki and Laura Graham discuss their podcast, "Navigating Mental Illness: Parent Stories."

They talk about their personal journeys and experiences with mental illness in their families, emphasizing the importance of storytelling and providing a platform for parents to share their stories. The podcast aims to offer support, resources, and hope to parents who are dealing with the challenges of mental illness in their children. Bill and Laura also highlight the power of vulnerability and listening in building connections and healing.

They encourage listeners to reach out and share their own stories on their podcast. You can find their podcast on various platforms and connect with them on their website below.

Links & Resources

Bill & Laura's podcast and website

This episode brought to you in part by Reata Pharmaceuticals.

229 - Exercise and Motivation: Challenges of Disability

Mon, 02 Oct 2023 07:01:00 -0400

Keeping an exercise routine is difficult for everyone. Add a rare disease in the mix and there are even more difficulties. The Dudes talk about their motivations, and the difference between motivation and discipline.

Also:

Hear Sean's most recent travel story about his lost walker on Southwest Airlines. This story was recently featured in USA Today.
Quote of the week: "Discipline is choosing between what you want now and what you want most." - Abraham Lincoln

Links and Resources:

This episode brought to you in part by Reata Pharmaceuticals.

228 - Podcasting Insights and Reflections

Mon, 25 Sep 2023 07:01:00 -0400

Advancement is about learning and implementing new ideas and techniques. In August, The Dudes attended the Podcast Movement conference in Denver, CO. They learned a lot about the podcast industry and how to improve the show - and a few things that apply to their everyday mindset.

Links and Resources:

Podcast Movement

This episode brought to you in part by Reata Pharmaceuticals.

227 - Pushing Boundaries: A Blind Athlete's Story

Mon, 18 Sep 2023 07:01:00 -0400

Despite being visually impaired, Dave Wilkinson has accomplished remarkable feats, including marathons and Ironman competitions. His next ambitious goal: the Race Across America, a 3,000-mile non-stop bike race. Dave shares his journey, emphasizing the importance of trust between guide and athlete, and how he overcomes challenges. His story is a testament to pushing boundaries and embracing life's adventures, even when tinged with danger. Tune in for a powerful and motivational conversation that reminds us that anything is possible with the right mindset and determination.

Links and Resources:

Learn more and support Team Speedy Turtle

This episode brought to you in part by Reata Pharmaceuticals.

226 - Navigating Disability & Long-term Relationships

Mon, 11 Sep 2023 07:01:00 -0400

Join the dudes as they dive into a candid conversation about the complexities of commitment, relationships, and disability. They explore how disability can introduce uncertainty and self-doubt into one's pursuit of a long-term partnership. Discover valuable insights and reflections on the role of societal norms, personal growth, and human nature in shaping our desires for companionship. Tune in to gain a deeper understanding of the challenges and nuances surrounding commitment.

This episode brought to you in part by Reata Pharmaceuticals.

225 - From Preterm to Pediatrician: Tyler's Triumph with CP

Mon, 04 Sep 2023 07:01:00 -0400

Dr. Tyler Sexton is the Medical Director of pediatrics at Singing River Health System in Mississippi. He's also an international motivational speaker and author, and he has cerebral palsy.

Dr. Sexton discusses his journey and how his disability motivated him to become a pediatrician. He shares his early struggles, as he was born prematurely and given a grim prognosis, but he defied the odds through 18 surgeries, months of hospital care, and determination.

As a doctor with a disability, Dr. Sexton talks about how he can uniquely relate to his patients, offering them understanding and compassion that able-bodied doctors may not provide. He mentions that while some patients have initially hesitated to be treated by him because of his disability, he has been able to win them over with his expertise and care.

Dr. Sexton's parents encouraged him to dream big and not let his disability define him. He also advocates for radical authenticity and resilience, reminding everyone that we all face challenges and can choose to live in excellence.

Links and Resources:

This episode brought to you in part by Reata Pharmaceuticals.

224 - The Power of the Patient Voice - BIO International

Mon, 28 Aug 2023 07:01:00 -0400

To kick off the inaugural Film Festival at the BIO International Conference, we had the opportunity to moderate a panel about using podcasts, video, and other media to help center the patient voice in the drug development process.

This panel featured three top advocates who regularly use media to amplify the patient voice:

Daniel DeFabio, Co-Founder, The DISORDER Channel
Michelle Rivas, Senior Manager, Communications, Horizon Therapeutics
Eve Dryer, Vice president, Patient Advocacy, Travere Therapeutics

We learned a lot from these fellow advocates and we hope you do too!

223 - Attitudes Can Change - Let's Talk Debra

Mon, 21 Aug 2023 07:01:00 -0400

A few years ago, Kyle and Sean both had experiences with someone else judging them for their disability. Whether it was fair or not, both dudes took offense to the way they were approached. Today they review those situations and reevaluate their reactions. Would they react differently today? Listen to find out.

Links and resources:

2DD Episode 114 - Don't Judge A Dude By His Wheelchair

rideATAXIA Philadelphia - Sunday, October 8

222 - Is Technology Good or Bad? Yes.

Mon, 14 Aug 2023 07:01:00 -0400

Ever have those moments where you reflect on the past and think to yourself, “Well, 20 years ago…” and immediately realize that the memory you’re recalling was actually 30 years ago? In other words, time flies and we’re all getting old.

In this episode, The Dudes discuss pros and cons of how the world has changed over their lifetime, especially highlighting the global connectedness that the internet, smart phones, and social media has allowed. Perhaps such ability to connect with others has been the most significant game changer for the rare disease community in the last 20 (or 30) years?

Links and resources:

Sean's column - How improved global connectedness benefits the rare disease community

221 -Disability & Fun Can Coexist

Mon, 07 Aug 2023 07:01:00 -0400

Season 10 kicks off with ep221. Life is constantly changing, especially when living with progressive rare disease. Both Kyle & Sean are living with Friedreich’s ataxia and their abilities are changing often. Recently, Sean hit a mini-golf course and although it wasn’t what he remembers as a teenager, he still found ways to have fun. Ep221 reminds us that “fun” is what you make of it and how you define it.

Links and Resources:

Sean's Column - Living with Friedreich's ataxia doesn't mean I can't have fun

220 - Season Finale - How Much is Too Much?

Mon, 29 May 2023 07:01:00 -0400

For the last episode in Season 9, we want you to know how much we appreciate you listening to this show. This season has been especially trying as we unknowingly doubled our workload at the beginning of the season. Listen as the dudes explain. The conversation goes existentially deep as usual. Enjoy. Thank you for listening.

In this Episode:

In a previous episode, the dudes talked about a hotel bed that was too high. Sean just got a new bed and you might be able to guess what he thinks of it...
You Got This, Mental Health featuring Dr. Al Freedman - We've had him on Multiple times because he's doing great work. Dr. Al's sweetspot is the intersection between Rare Disease and Mental Health because of his son Jack who lived with SMA for 26 years. Dr. Al joins us to talk about the fact that Rare Disease may not be the only source of challenge in someone's life.
The Dudes are both wired for productivity so staying busy is a big part of life. But when is it too much? Where's the line? How does this line play into our vision and goals?
Thank you notes - Ted Lasso, and Sean's Landlords.

Links and Resources:

This episode brought to you in part by Reata Pharmaceuticals.

219 - Physical Therapy Goals with Dr. Gretchen Hawley

Mon, 22 May 2023 07:01:00 -0400

Physical Therapy is an important part of care for many people in the rare disease and disability communities, However, it's difficult to find a phhysical therapist who will work to understand your disease. That's why we enjoyed talking with Dr Gretchen Hawley. See how she's different and how you might be able to put some of her principles into practice.

In this Episode:

Kyle talks about Team FARA's participation in Bike New York's Five Boro Bike Tour along with 30,000 other people.
You Got This, Mental Health featuring Shelley Bowen - Shelley joins us again to talk about the value of a good therapist when facing life's challenges.
Dr. Gretchen teaches us that listening and understanding are important aspects of a good physical therapist.
Thank you notes - Team FARA Teammates and new friends Chris, Tierra, Chris, Kahlua & Kai

Links and Resources:

This episode brought to you in part by Reata Pharmaceuticals.

218 - Accessibility: Inconvenient or Impossible?

Mon, 15 May 2023 07:01:00 -0400

There are lots of things that may be accessible for one person but not another. Some are inconvenient, and some are impossible.

From topics in other episodes to recently traveling together, we noticed a handful of things that make sense, and things that don’t make sense. Listen for experiences, both good and ridiculous, as we discuss the challenges of accessibility.

In this Episode:

Sean tells us the latest in his dealings with StorQuest. Spoiler: It's not good.
You Got This, Mental Health - Sean and Kyle share similar stories of their wheelchairs rolling away from them. We all struggle. Sharing with others can help lighten the load.
The Dudes talk about a recent experience at a hotel. It helps expose some issues about accessibility.
Thank you notes - An aquaintance at a laundromat, and Neighbor Melanie (the best!)

Links and Resources:

Episode 193 - Accessibility Matters: Air Travel is Not Exempt - with Mary Caruso

This episode brought to you in part by Reata Pharmaceuticals.

217 - Are Disabled Students Forgotten On University Campuses?

Mon, 08 May 2023 07:01:00 -0400

For college students, sports games are a huge part of the college experience. However, students with disabilities are often left out due to poor accessibility. In episode 217 you'll hear from Noah Griffith, a journalism major who wrote a letter about his experience accessing the student section at a basketball game. Noah used his voice to make a difference.

In this Episode:

The Dudes discuss how planning and execution are two different things when it comes to Airlines.
You Got This, Mental Health featuring James Miller - You might remember James from Episode 068. James is a Psychotherapist and joins us to talk about the people we choose tto spend our emotional energy on.
The Dudes talk to Noah Griffith about the difference he is making at Auburn University due to his disability.
Thank you notes - A Chili's Host, and Airport Bathroom Guy

Links and Resources:

This episode brought to you in part by Reata Pharmaceuticals.

216 - The Emotional Response To Research

Mon, 01 May 2023 07:01:00 -0400

Research studies are designed to investigate the details of our bodies and lives. The research process has the potential to point out how our disability limits us. This can be tough to take. That’s why it’s important to recognize the emotional response to research.

In this Episode:

Kyle left the house to get pants.
You Got This, Mental Health featuring Heidi Behr - You might remember our friend Heidi from Episode 182 - Comparing Ted Lasso To Reality. Heidi returns to talk about JOY and how we find our way there.
The Dudes discuss the emotional response to the use of assistive technology. Emotions can get heavy when we think about the need for these things.
Thank you notes - Kyle's Socks and Friends that help move stuff

Links and Resources:

This episode brought to you in part by Reata Pharmaceuticals.

215 - Birthday Parties Can Be Tough with Guest Host: Effie Parks

Mon, 24 Apr 2023 07:01:00 -0400

This is the first episode ever that does not feature both Dudes! Sean is joined by our friend and guest host, Effie Parks from the Once Upon A Gene Podcast. Effie produces short “Effisodes” on her show and one in particular grabbed Sean’s attention. With Kyle on the road, Effie agreed to help The Dudes with this episode and takes Kyle's place, in addition to allowing us to share one of her Effisodes.

In this Episode:

How Effie got into podcasting.
You Got This, Mental Health featuring Shelley Bowen - Grief is a process. Everyone grieves differently. It's ok to figure it out as you go. Listen to hear Shelley's wisdom.
In an Effisode, Effie talks about a touching experience at a recent Birthday Party.
Thank you notes - Rodney Samaco, Ph.D., PT with Dri

Links and Resources:

Barth Syndrome Foundation

This episode brought to you in part by Reata Pharmaceuticals.

214 - Inspiration Porn - Are We Part of the Problem?

Mon, 17 Apr 2023 07:01:00 -0400

According to an article Kyle read on Forbes.com, "Inspiration Porn provides kind of superficial pleasure and gratification for the viewer, while objectifying , often harming the mostly passive subjects being looked at.” Sounds pretty bad. Find out what the Dudes think.

In this Episode:

Kyle gets Door Dash delivered to the wrong address...again.
You Got This, Mental Health featuring Kate Walker - Many of us ask ourselves "why me?" when thinking about our rare disease. Kate helps us explore why we should brake that habit.
The Dudes discuss how they might be perpetuating the idea of Inspiration Porn by benefiting from the attention that comes from having a disability.
Thank you notes - A grocery store-apple-helper and a Chipotle cashier.

Links and Resources:

Matthew LaFleur's Article: The importance of resilience and other lessons from my diagnosis
Stella Young's TEDx Talk: I'm not your inspiration thank you very much
How to Avoid "Inspiration Porn" by Andrew Pulrang for Forbes.com

This episode brought to you in part by Reata Pharmaceuticals.

213 - Why is Government so HARD?

Mon, 10 Apr 2023 07:01:00 -0400

As Sean says: Government is HARD - especially when trying to navigate the Social Security Disability system. That’s why we talk to Spencer Bishins who worked in the Social Security Administration for years and shares his insights with us. Spencer just scratches the surface with us- but you can find all the details in his book: Social Security Disability Revealed - Why it’s so hard to access benefits and what you can do about it.

In this Episode:

Sean explains how StorQuest made it so easy for him to never do business with them again.
You Got This, Mental Health featuring Lara Bloom - There are many challenges living with a disability. On top of the physical challenges, people with invisible disabilities often have a hard time getting strangers or even doctors to believe them - Lara shares her perspective and how the Ehler's Danlos Society is addressing the issue.
Spencer Bishins gives us some insight into why it's so hard to access Social Security Disability Benefits.
Thank you notes - Two nice people.

Links and Resources:

This episode brought to you in part by Reata Pharmaceuticals.

212 - Wheelchairs: If You Help, This is For You

Mon, 03 Apr 2023 07:01:00 -0400

Maneuvering a wheelchair presents many situations that are much different than a person who uses their legs to get around. When you offer to help someone in a wheelchair, here are a few things you should keep in mind.

In this Episode:

Kyle checks out a new section of bike trail so Sean wants to make sure he does it safely.
You Got This, Mental Health featuring Kate Walker - Depression is common for people living with Rare Disease - Kate shares a bit of her experience dealing with depression.
Sean brings his "Top Ten" list of annoyances while traveling in a wheelchair - constructive feedback for those who want to help.
Thank you notes - The people who make bike trails happen, and Sean's editors at Friedreich's Ataxia News

Links and Resources:

Depression and anxiety in patients with different rare chronic diseases: A cross-sectional study

This episode brought to you in part by Reata Pharmaceuticals.

211 - Thriving with Duchenne, RDD 2023

Mon, 27 Mar 2023 04:05:00 -0400

For Rare Disease Day 2023, we were honored to moderate a virtual panel with our friends at Jett Foundation. The theme was Thriving with Duchenne; a Rare Disease Day event focused on mental health and anxiety and it features a diverse panel of patients, caregivers, a life coach, and a Psychologist.

Duchenne Muscular Dystrophy (DMD) affects mostly males and causes progressive muscle damage in the entire body. It is the most common fatal pediatric disorder.

Duchenne has no cure. But the individuals in this episode are determined to Thrive with Duchenne.

210 - Death and Sex - Buckle Up!

Mon, 20 Mar 2023 07:01:00 -0400

In this Episode:

You Got This, Mental Health - Our friend Shelley Bowen (Ep 140) takes us through her experience having the hard talk about death.
The Dudes are quite uncomfortable talking about SEX, especially sex and disability. So we welcome Jennie Williams from Enhance the UK to introduce the topic.
Thank you notes - Kyle's Condo Community - Old Forge Crossing, and a backwards thank you for StorQuest.

This episode happens to contain two topics that we’ve never addressed in depth. This is because we never had the words or the right people to guide us. Our feature conversation is with @enhancetheuk Founder & CEO, Jennie Williams who leads us on a deep dive into the world of sex and how it matters amongst disabled and nondisabled persons. Shelley Bowen also joins us again for a short chat on preparing for the tough conversation of advanced directives. Ep210 is fully packed, buckle up!

Links and Resources:

209 - How A Mom Launched The First Drug Approval in FA

Mon, 13 Mar 2023 03:01:00 -0400

In this Episode:

You Got This, Mental Health - Feeling seen and heard. Some of the responsibilty is on you.
Can a single person make a difference? The amazing story of the first approved drug for Friedreich's ataxia (FA)
Thank you notes - Reata Pharmmaceuticals, and Kyle's landlord at work.

As the story goes, in an effort to do whatever she could for her son who lives with Friedreich's ataxia (FA), a concerned mother connected a few important dots about science and the pharmaceutical industry. When she decided to make a phone call to the Friedreich's Ataxia Research Alliance (FARA), she started a series of actions and events that eventually led to the approval of the first treatment for FA, SKYCLARYS. Listen for the details.

Links and Resources:

Announcement: First Medication to Treat Friedreich's Ataxia Approved on Rare Disease Day!

208 - Is There a Wrong Way?

Mon, 06 Mar 2023 08:01:00 -0400

In this Episode:

The very first treatment for Friedreich's ataxia (FA) was approved last Tuesday! A deep dive into this next week.
You Got This, Mental Health -
There's not one "right" direction in life. Keep moving forward and making progress.
Thank you notes - Clinical Team at Children's Hospital of Philadelphia and Sean's Personal Barista

It’s easy to second guess our choices and doubt our decisions. Although there may be more efficient steps to take or faster directions to follow to get to our destination, is there ever a wrong way? Hear The Dudes share their experiences and perspectives.

Links and Resources:

Sean's Column: Moving in a Positive Direction | Living With FA Reinforces My Commitment to Making Progress

207 - Asking For Help: Pride vs. Practicality

Mon, 27 Feb 2023 08:01:00 -0400

In this Episode:

How Kyle ended up at Cracker Barrell for chicken fried steak at lunchtime
You Got This, Mental Health featuring Andra Stratton - Managing expectations for drug development
Asking for help is complicated. The Dudes talk through some of the different scenarios that make it so.
Thank you notes - Gail Moore

We all need help sometimes. However asking for, and receiving help are not straight forward. Sometimes our pride gets in the way of other people trying to offer help.

Links and Resources:

Asking for help is so damn hard. Here's how to make it easier

This episode brought to you in part by Horizon Therapeutics.

In honor of Rare Disease Day, the #RAREis Global Advocate Grant program is awarding 50 grants totaling $250,000 to global patient advocacy organizations working to support the community. Learn more and apply at rareiscommunity.com/grant

206 - Why Authenticity Matters at Home & Work

Mon, 20 Feb 2023 08:01:00 -0400

In this Episode:

Dr. Kyle gives his advice.
You Got This, Mental Health - Self Image
Audrey Greenberg is the CBO of Discovery Labs and the Center for Breakthrough Medicines. She talks with The Dudes about how authenticity can benefit all of us.
Thank you notes - Bill at Meineke & Taylor Wohler

When you come as you are, others feel free to bring their authentic selves to the conversation. This is one of the many things we took away from our conversation with Audrey Greenberg, CBO of the Center for Breakthrough Medicines. Greenberg manages the 1.6 million-square-foot campus at the Discovery Labs King of Prussia, PA one of the largest facilities for life sciences and technology in the world.

Links and Resources:

Mental Health - Self Image

This episode brought to you in part by Horizon Therapeutics.

205 - Finally, A Dating App For People With Disability

Mon, 13 Feb 2023 08:01:00 -0400

In this Episode:

Almost a year later, Kyle gives an update on his wheelchair drama.
You Got This, Mental Health featuring Andra Stratton - Managing our expectations for Drug Development.
The Dateability App - Designed by someone with a disability for the disabled community.
Thank you notes - Dr. Anna Stepanova & Aaron Fisher

After learning of her own disability and chronic illness, Jacqueline was exposed to a persistent ableist mentality and she wasn’t a fan. This showed up a lot in her dating life and she couldn’t find a dating app that she felt safe using and that helped her meet people that understood disability. So, she teamed up with her sister and they launched The Dateability App.

Links and Resources:

This episode brought to you in part by Horizon Therapeutics.

204 - What If Kindness Isn't The Answer?

Mon, 06 Feb 2023 08:01:00 -0400

Welcome to Season 9!

Dolly Parton wants to see more kindness in 2023. However if you ask Sean, kindness is not the issue - it's awareness of others around you. It will make sense after you listen.

Sean's column on the subject: No Good Excuse

This episode brought to you in part by Horizon Therapeutics.

203 - Reason vs Excuse: It's Up To You

Mon, 28 Nov 2022 05:01:00 -0400

There's a common debate going on in many of our heads when it comes to committments. Whether it's meeting a friend for coffee, or going to a concert with a group, we have to decide if we can make it. If we decide not to go or even worse, cancel at the last minute, is it for a legit reason or are we just making an excuse? Ultimately that's for you to decide for yourself...

Resources mentioned in this episode:

Intro post for Sean's column: No Good Excuse
2DD episode 178 - Man Turning Into Stone - Joe Sooch

This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.

The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts

202 - Addressing Independence and Accessibility with Rare Disease

Mon, 21 Nov 2022 08:00:00 -0400

Making the transition to independence is difficult to begin with. It is further complicated if you have a rare disease. Lauren Riggs joins The Dudes to talk about her recent experience moving away from home to go to school at University of Oklahoma and then grad school in Texas. Lauren lives with Friedreich's ataxia (FA). Her own journey with accessibility leads her to facilitate accessibility for others.

During this episode, Lauren explains the Spoon Theory which many people living with rare or chronic disease can relate to.

This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.

201 - How Does Positivity Become Toxic?

Mon, 14 Nov 2022 08:00:00 -0400

When Katie Lloyd's son was diagnosed with a rare, lifethreatning disease, she began to notice that people around her reacting to the news in some unintentionallyinsensitive ways.

When we witness someone going through a difficult situation, our first impulse is to say something encouraging: "Chin up!" "The Sun will come out tomorrow". However, responses such as this can be counterproductive because they lack empathy and understanding. Instead, perhaps we should simply acknowledge the difficulty and "hold space for each other."

The Dudes agree that this is a topic that we can all learn from.

Katie's blog: https://averyrareadventure.com/

This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.

200 - State of the Podcast and A Few Favorite Moments

Mon, 07 Nov 2022 02:11:00 -0400

We have been doing this for 6 years - we're still friends, and we hope a few people have enjoyed listening. Let's celebrate episode 200 with a little reminiscing, a few old snippets, and a brief look at the future of the show.

Some of our favorite epispdes that we mentioned:

This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.

199 - RAVE: A Principle Everyone Ought to Consider

Mon, 31 Oct 2022 06:07:00 -0400

A guiding principle Sean has adopted from his employer applies to every area of life - Respect, Appreciate, and Value Everyone, a.k.a RAVE.

As a Fortune 100 Best Companies to Work For, Nugget Markets, Inc. is careful with the culture they foster and honor. In this episode, Sean shares a glimpse into this particular core value that is worth everyone’s consideration.

A couple of mentions in Episode 199:

Episode 040 with Arash Bayatmakou
CanDo’s Keto Krisp. Listen to ep198 for a discount code from the Founder - Adam Bremen.

198 - What's Your CanDo Story?

Mon, 24 Oct 2022 01:38:00 -0400

Adam Bremen is the co-founder of CanDo, the maker of the #1 Keto bar on Amazon, Keto Krisp. Despite living with Cerebral Palsy and having experienced much hardship and loss in his life, Adam is one of the most positive and genuine people we've ever had on the show. The success of his brand is not surprising given his outlook on life and his support for others.

We've tried Keto Krisp and we're fans. You can try the delicious bars too, by visiting tastecando.com and entering ADAMCANDO at checkout for your discount.

Adam credits his friend Jesse Billauer for inspiring him to get in shape. Check out Jesse's adaptive surfing and other events at liferollson.org.

197 - Looking for the Pause Button on Friedreich's Ataxia

Mon, 17 Oct 2022 01:38:00 -0400

Rare Disease is ever present and relentless. Sometimes we wish we could push the pause button and live an able bodied life for a little while.

Kendall harvey writes about this struggle in her recent column for Friedreich's Ataxia News. The article is called FA Progression No Longer Has Total Contr Olver My Life and she talks about it with The Dudes.

Follow Kendall on Instagram as she chases her 9th fundraising title for rideATAXIA Dallas.

196 - Two Disabled Slackers

Sun, 09 Oct 2022 22:59:00 -0400

Sean is overwhelmed at the moment. He has too much on his plate and life is chaotic. Kyle's plate is pretty full too. However there's always something to talk about.

Listen as the dudes talk about being over subscribed and possible strategies to avoid this situation.

195 - Leveraging Crypto for Rare Disease - Vibe Bio CEO, Alok Tayi

Sun, 02 Oct 2022 22:41:00 -0400

The biggest obstacle to treating patients with overlooked diseases isn’t finding potential treatments — it’s funding them.

Alok Tayi

Join the Dudes as they get a glimpse into the world of Cryptocurrency and discover how patient communities can have more control of research direction as they chat with Vibe Bio CEO, Alok Tayi.

194 - Taking It Personally May Hold You Back

Mon, 26 Sep 2022 00:51:39 -0400

Sean loves to play the game Risk online with people he doesn't know. When someone attacks him, rather than focusing on trying to win the game, his strategy is sidetracked by the need to destroy this person who injured him. Until one day he realized it was better to just play the game and not take attacks personally. This concept relates to many situations for The Dudes. Listen and enjoy this deep conversation :-)

This episode was brought to you in part by Horizon Therapeutics.

In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.

193 - Accessibility Matters, Air Travel Is Not Exempt

Sun, 18 Sep 2022 13:07:18 -0400

Kyle's Wheelchair was damaged on an American Airlines flight in April. It is now September and it is just now getting resolved.

While working his way through the situation, Kyle phoned a friend, Mary Caruso who provided advice and encouragement about the process and how to conduct oneself while advocating for what you need. Ultimately Mary's advice lead to a reimbursement check from the airline.

You gotta know your rights and you gotta believe that you are just as important as the person next to you. Take it from Mary.

This episode was brought to you in part by Horizon Therapeutics.

192 - Life's Short, Live With Intention

Sun, 11 Sep 2022 21:55:07 -0400

In this week's round of Guess What, both dudes came out winners. Kyle won because Sean gave it away. Sean won on a technicality.

Then, Kyle introduced a topic based on his recent cycling adventure: We are constantly faced with decisions that affect the outcome of our lives. Our response to these decisions is often determined by the priorities we set for ourselves either consciously or unconsciously.

Through their discussion, the Dudes challenge each other to be intentional about setting priorities to help make decisions that serve those priorities.

In thank you notes, Sean thanks Canva for their support of Non Profits. Kyle thanks Chris Farley for all the laughs.

Enjoy!

This episode is brought to you in part by Horizon Therapeutics.

191 - A Mother Who Never Stops

Sun, 04 Sep 2022 21:45:57 -0400

Tracy Dixon Salazar is a mother, scientist, and Executive Director of the Lennox-Gasteau Syndrome Foundation.

"I don't think we should be writing off Rare disease Patients and assigning them death sentences anymore. I think we should be rolling up our sleeves and doing a covid like movement to actually start saving some people's brains"

Tracy Dixon-Salazar

Lennox-Gastaut Syndrome (LGS) is a severe epilepsy syndrome that develops in young children and often leads to lifelong disability.

The LGS Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awarenesss, and family support.

This Episode is brought to you in part by Horizon Therapeutics.

190 - Our Reactions Determine Our Outcomes

Sun, 28 Aug 2022 22:30:42 -0400

There are so many things in life that are out of our control but our reaction to them is always in our control.

189 - LIVE at Chan Zuckerberg Initiative Rare As One

Sun, 21 Aug 2022 23:55:02 -0400

At the beginning of June we were invited to moderate a panel at the Chan Zuckerberg Initiative Rare as One Annual Meeting in San Diego, CA.

Most of the time diagnosis of a rare disease comes out of the blue and includes life altering, and life shortening symptoms. The effect of which leave familiy members and friends to manage care and figure out how they might solve the problem. Many times this means starting a nonprotit organization to advance science toward a treatment and cure. Patients, parents and friends run these organizations with little to no budget or training. These heroic efforts make slow progress while testing the resolve of their leaders who are constantly operating at the edge of their emotional, and physical capacity.

The CZI Rare as One Program provides funding and training to build or expand research networks as well as increase organizational infrastructure to support this important work.

The program started in 2019 and this was the first in person meeting of the 50 grantee organizations that make up the Rare as One Network. It was an emotional time as the grantees continued to learn and laugh together in 3D instead of through a screen.

We had the opportunity to moderate the closing session to talk about the incredible progress to date and the future of the program with three leaders of Rare as One,

Vice President, Science in Society at CZI, Tania Simoncelli
Rare as One Program Manager, Heidi Bjornson-Pennell
Rare as One Program Associate, Andra Stratton

Enjoy the conversation.

188 - Dealing With Disability Among Friends

Sun, 14 Aug 2022 21:30:15 -0400

Is Kyle's dad trying to kill him?

A new season, a new segment: Guess What?

Plus:

Living with a disability can be isolating. Especially among able bodied friends. However like most things in life it's about how we react. Whether that's communication about the situation or being proactive and finding more accessible activities, our reaction will determine our experience and the ecperience of the group.

Sound from zapsplat.com.

187 - Life Lessons From the Bike Trail

Sun, 07 Aug 2022 18:49:05 -0400

Kyle just finished a crazy cycling adventure in the backwoods of Montana and Idaho. 12 days in, Kyle called Sean with some insights from the journey which we can all apply to our lives every day. Sean's analysis may hit home with you.

S8 - Catching Up with The Dudes

Sun, 31 Jul 2022 22:46:16 -0400

The Dudes take 8 weeks off from publishing episodes between seasons. However, they stay pretty busy with their day jobs, extracurricular activities, and even this podcast. With the start of Season 8, this episode features a conversation between Kyle & Sean catching up on the busy summer they've had.

The Dudes mention a few things they'd love for you to check out:

For rideATAXIA events and impact, visit www.rideataxia.org

For team de:terminence, visit www.determinence.com

To follow Kyle's blog and GPS of his current adventure, "Ride Wild," visit: www.KyleABryant.com

185 - Season Finale - Nothing Stays the Same

Mon, 30 May 2022 00:40:50 -0400

Update on Google's speech recognition app for people with speech impairments.

Plus, a discussion about how acknowledgement of the progression of disease affects planning in life. Once again, talking about the tough stuff may help us along in our journey with any health challenge.

184 - Thriving With Duchenne - Jett Foundation

Sun, 22 May 2022 16:47:58 -0400

Living beyond circumstancemeand finding ways to thrive with whatever hand you're dealt. In this episode we hear from 4 young men who are thriving in their lives with Duchenne Muscular Dystrophy.

Jett Foundation put together this panel as their community joined in the recognition of Rare Disease Day on the last day in February.

The mission at Jett Foundation is to extend and enrich the lives of individuals affected by Duchenne muscular dystrophy and other neuromuscular disorders.

Jett Foundation partners with individuals and families through empowering educational programming, transformational direct service experiences, and by accelerating the development of life-changing treatments.

183 - Doing The Right Thing with James Mackay, CEO Aristea Tx

Mon, 16 May 2022 01:05:40 -0400

James Mackay, PhD, Founder, President and Chief Executive Officer of Aristea Therapeutics, has over 25 years of development and commercialization expertise in the pharmaceutical industry, including 6 drug product approvals across multiple therapeutic areas. James joins The Dudes to discuss his experience and how he is contributing to and benefiting from the biotech leadership community.

182 - Comparing Ted Lasso to Reality with Heidi Behr, LCSW

Sun, 08 May 2022 23:05:29 -0400

Ted Lasso is a popular show on Apple TV about an american football coach who gets recruited to a pro soccer team in London. One of the show's strongest themes is mental health and how it affects everything we do.

Heidi Behr is a Licensed Clinical Social Worker (LCSW) and she joins us to talk about how Ted Lasso Portrays mental health and therapy.

181 - Every Person Matters with Tom Hamilton

Mon, 02 May 2022 00:54:57 -0400

Tom Hamilton is a changemaker in the FA and Rare Disease Communities. He works tirelessly to promote treatment progress. He is also a father and is constantly balancing between protection, and encouragement of his daughter Annie and all those in the FA community. Listen as Tom shares his perspective on parenting, advocating, and working toward a treatment.

180 - The Not So Dark Side with Amy Grover

Mon, 25 Apr 2022 02:00:44 -0400

Amy Grover has spent more than a decade in the rare disease space - cultivating her passion for helping others in the nonprofit world until recently. Now, Amy is using her expertise and heart of gold to bring patients and industry together in pursuit of better outcomes. As the newly appointed Senior Director of Patient Advocacy with Catalyst Pharmaceuticals, Amy is well-positioned to help meet the needs of patients while advancing treatments and services within the for-profit arena. Amy joins us for a casual conversation touching on the Niners vs. Rams, motherhood, and her work at Catalyst Pharmaceuticals.

179 - Keep Your Eye On The Ball

Sun, 17 Apr 2022 23:24:52 -0400

Completing tasks is about focus. If we take our eye off the ball, that's when we get off track. Listen as the Dudes talk about how this principle applies in their life.

Participate in Disability Book Week, April 23-29.

178 - Man Turning Into Stone - Joe Sooch

Sun, 10 Apr 2022 22:13:07 -0400

Joe Sooch points out that we only have one life to live so we better make the most of it. He has a rare disease called Fibrodysplasia ossificans progressiva (FOP) - a genetic disorder that causes soft tissues to transform permanently into bone.

Joe uses a wheelchair and FOP has limited his physical abilities in many other ways. However he is determined to make the most of the time he's been given.

Find Joe Sooch on YouTube or Instagram.

Listen to Joe interview us on his podcast Two Mics, One Joe Sooch.

177 - The only thing to fear is...

Sun, 03 Apr 2022 13:51:18 -0400

Some fears are healthy and they keep us from getting hurt. Some fears are totally legit but they may keep us from enjoying the little things in life. Some fears are a little ridiculous and silly.

176 - Rare Disease Symptoms - The Devil You Know

Sun, 27 Mar 2022 22:06:29 -0400

Promising treatments for many rare diseases are on the horizon. As they start to become a reality, it's important for us to adjust our expectations of what symptoms could potentially be relieved.

Listen as the dudes discuss their symptoms and show appreciation for friends and family who are deeply committed to traveling this rare disease journey.

175 - Making Noise About Hemophilia

Sun, 20 Mar 2022 23:46:37 -0400

March is Hemophilia Awareness Month!

Most people would call him an accomplished musician - Max Feinstein says he's been a noisemaker his whole life. Recently he has been using music to express his journey with Hemophilia and connect with others in the Rare Disease community.

174 - The Dudes with Squirmy and Grubs

Sun, 13 Mar 2022 13:00:54 -0400

Rude online comments are just part of the challenge for interabled couple and YouTubers Shane and Hannah Burcaw. Battling ableism has become part of the struggle but they continue to be an incredible example for the rare disease and disability communities with their marriage and their YouTube channel: Squirmy and Grubs which has over 900k subscribers. Check out their collaboration with Genentech at: smamyway.com.

173 - Don't be Weird - Ennis Rook Bashe

Sun, 06 Mar 2022 14:17:48 -0400

Ennis Rook Bashe writes fantasy stories featuring disabled characters partly for social justice but mainly because "it's just fun." We certainly had fun in this conversation. Learn more about Ennis and their latest work at ennisrookebashe.com.

172 - Rare Disease is Complicated but There's Reason for Hope

Sun, 27 Feb 2022 17:19:48 -0400

While seeking to live beyond circumstances, we often look past the challenges of our situation. Maybe this is good, maybe it's bad, maybe both...

As the Dudes ponder this thought, they discuss reasons to remain optimistic. Enjoy!

BTW, Feb 28 is Rare Disease Day

171 - What if Everyone Is Disabled?

Mon, 21 Feb 2022 02:58:20 -0400

Our friend Erin Pieper wrote a book called Dismantling the Disability (release date 2/22/22) and in this episode she sets up the discussion by wondering what the world would be like if everything were set up for people with disabilities.

170 - What's Your Strategy?

Mon, 14 Feb 2022 02:05:13 -0400

We all have goals but we may never reach them unless we have a specific strategy to reach them. In this episode, the dudes discuss a few of their 5 and 10 year goals anfd a few straqtegies to get them there.

169 - Season Finale - NO REGERTS!

Sun, 05 Dec 2021 21:32:07 -0400

Turning 40 caused both of us to reflect on everything we've done up to this point. Do we have regrets?

We can't change the past but we can decide what we want and go after it from this day forward.

168 - 2DD Forum: CureDuchenne FUTURES Conference 2021

Fri, 26 Nov 2021 18:30:43 -0400

The CureDuchenne FUTURES Conference focuses on bringing education, resources, and connection to the Duchenne Muscular Dystrophy community. The 2021 agenda centered on Quality of Life.

In this 2DD Forum, our Friends Jake and Glen taught us a lot about the mindset required to live a fulfilling life with Duchenne or any challenge. We enjoyed the conversation and we hope you do too.

167 - Peace of Mind with Mobility Roadside Assistance

Sun, 21 Nov 2021 15:01:29 -0400

Flat tire! Stranded on the side of the highway.

If you have a mobility challenge, or more than two people, you may not be able to ride in the tow truck with your car. That's where Mobility Roadside Assistance can help. They will send an accessible vehicle to pick you up.

Listen to find out all about their service from their CRO, Marcus Norton.

166 - Ultra Rare Drugs at No Cost to the Patient - Stan Crooke

Mon, 15 Nov 2021 00:17:02 -0400

Stan Crooke has been in the drug development game for a long time. He is the founder of Ionis Pharmaceuticals and now he has pioneered a method to develop and provide medicines to Ultra Rare communities of 30 patients or less. This idea blew our minds and I think you will enjoy hearing from Stan.

165 - Coaching for Rare and Chronic Conditions - Denise Archilla

Mon, 08 Nov 2021 04:03:07 -0400

Dealing with a Chronic disease can be a lonely situation, especially for young people who may feel misunderstood. That's why Denise Archilla started Chronic Warrior Coaching and the Chronic Warrior Collective - to have a place for kids to be seen and heard. Listen to hear about some of the struggles of a Chronic Warrior and how Denise is addressing those needs.

Links for this episode:

Chronic Warrior Collective

Nebraska Ataxia

164 - Mental Health: Why Talking About the Tough Stuff Takes the Weight off

Sun, 31 Oct 2021 13:35:07 -0400

In episodes 155 and 157, we talked about the symptoms of Friedreich's ataxia (FA) and how they affect us, especially the mental and emotional aspect of dealing with the challenges. We both experienced some relief in the following ew weeks - merely because we got that stuff off our chest. Why is that? Listen as we discuss.

163 - Actor, Producer, Person - Patrick James Lynch

Sun, 24 Oct 2021 23:18:23 -0400

Patrick James Lynch is CEO of Bloodstream Media and creator of award winning documentaries, TV Shows, podcasts, and other media that entertains and educates about rare disease. He is a big presence in the Hemophilia community but has a certain resistance to becoming "Mr. Hemophilia". We really enjoyed the conversation and we hope you do too!

Some of Patrick's work:

Blood Stream Media

Stop the Bleeding Web Series

Bombardier Blood documentary

My Beautiful Stutter documentary

162 - Superheroes With Once Upon a Gene

Sun, 17 Oct 2021 19:02:13 -0400

Today we feature episode 87 - Superheroes from our friend Effie Parks at the Once Upon a Gene Podcast. This episode features a few different people and stories about the superheroes in their lives.

Check out our interview with Effie in an earlier episode: Episode 129.

161 - Men's Mental Health in Rare Disease With David Ross

Sat, 09 Oct 2021 23:52:51 -0400

It is understood that mental health is of huge importance in life, and it can be amplified in the rare disease community. And then add society's pull on the situation - Men are seemingly expected to be stoic and strong no matter what. You've got a recipe for a particularly difficult situation. That's what David Ross is addressing with his men's group focused on Men's Mental Health in Rare disease. Listen to find out more.

160 - Money Talks With the Dudes

Mon, 04 Oct 2021 00:20:51 -0400

Money is a factor in nearly all situations in life - especially when you factor in rare disease or another medical issue. In this episode the Dudes talk about how money and planning for the future factors into different aspects of their lives - including the age old question "can money buy you love?"

159 - Patient Pioneers in Gene Therapy with AVROBIO

Mon, 27 Sep 2021 00:36:44 -0400

Thanks to the AVROBIO team for a great day of patient advocacy. We feel so honored to be a part of these conferences and always take so much away from them. And a huge thank you to panelists Jordan, Darren, and Kim.

Gene Therapy treatments have the potential to make a profound impact in rare disease. However, these potentially permanent therapies present unique considerations for any participant in clinical trials.

When we were presented with the opportunity to moderate a panel of people who either participated in gene therapy studies or had extensive knowledge to share on this topic, we jumped on it!

AVROBIO’s vision is to bring personalized gene therapy to the world. They aim to prevent, halt or reverse disease throughout the body with a single dose of gene therapy designed to drive durable expression of therapeutic protein, even in hard-to-reach tissues and organs including brain, muscle, and bone. AVROBIO’s ex vivo lentiviral gene therapy pipeline includes clinical programs in Fabry disease, Gaucher disease type 1 and cystinosis, as well as preclinical programs in Hunter syndrome, Gaucher disease type 3 and Pompe disease.

For additional information, visit www.avrobio.com

158 - 2DD Forum With The Marfan Foundation

Sun, 19 Sep 2021 21:39:17 -0400

The Marfan Foundation is currently celebrating 40 years of service to patients and families affected by Marfan Syndrome and other related conditions.

We had the honor of participating in their 36th annual conference with a virtual discussion featuring 4 panelists who have each been significantly affected by rare disease.

Marfan syndrome is a genetic condition that affects the body’s connective tissue. Connective tissue helps to hold the body’s cells, organs, and tissues together and also helps to control how the body grows and develops.

There are several disorders related to Marfan that cause people to struggle with the same or similar physical problems, and anyone affected by these conditions needs an early and accurate diagnosis. Please visit www.marfan.org for more information about Marfan, Loeys Dietz, and Vascular Ehlers Danlos Syndrome.

Listen as Leah, Adrianna, Kristy and Micah share openly about their vastly different experiences but also their shared and wildly optimistic, fulfilling lives, despite the challenges and unpredictability of their conditions.

157 - Letters to the Younger 2DDs

Sun, 12 Sep 2021 23:53:37 -0400

Old men know a lot.

Combined, these two Dudes have 37 years of experience living with Friedreich's ataxia/rare disease/disability, and we made some observations along the way.

In this episode, using an idea we found in our friend, Kendall Harvey's column on Friedreich's Ataxia News, we explore what we would say to our newly diagnosed selves.

It's a very emotional episode and we hope you find value in it.

156 - Using Technology to Improve Accessibility

Sun, 05 Sep 2021 20:50:20 -0400

Anthony DeVergillo describes himself as an optimist. He sees a problem and inserts himself to find a solution. Specifically in the area of video game accessibility, Anthony is motivated to make an impact with the joystick he invented to allow people with disabilities access to the games they love. The project is called Overjoyed.

Listen to our interview with Anthony and get motivated to improve the world around you as Sean tries to wrap his head around airplane accessibility.

Links:

Anthony's Interview for The Playability Initiative.

Anthony on social media:

Connect with Anthony and others: https://ourodyssey.org/

155 - How We Describe the Challenges of Disability

Sun, 29 Aug 2021 19:16:50 -0400

Describing our challenges to another person is a powerful way to face them and find a way to think around them so these challenges don't become a roadblock in our lives. The Dudes feel fortunate to have each other to share with and to have you listening!

Discussion questions provided by Branding Science

154 - SMA Awareness with Nick Sinagra

Sun, 22 Aug 2021 16:01:42 -0400

August is SMA Awareness Month so we had a conversation with Nick Sinagra to learn about SMA and his journey with this rare disease. Nick is a true leader for all the things he has accomplished and continues to accomplish, and for the attitude he brings to all that he does. Plus hear about Nick's experience with Spinraza, a drug developed and FDA approved to treat SMA.

153 - NTSAD Annual Family Conference

Mon, 16 Aug 2021 01:31:59 -0400

This was the 43rd annual National Taysachs and Allied Diseases (NTSAD) annual conference and we were honored to moderate a panel with Sarah, Kevin, and Staci.

The video that Sean referenced near the beginning of the episode: https://www.youtube.com/watch?v=XFEXsquCA8U

Learn More about the family conference at https://ntsad.org/index.php/2021-annual-family-conference

More about NTSAD at https://ntsad.org

152 - How Do You Use Your Influence?

Sun, 08 Aug 2021 23:03:12 -0400

User reviews and social media can be used to affect change in business and society. It gets out of hand when users take advantage of the power that is in their hands. Listen as the dudes discuss Social Media and this new thing called Bluetooth.

Check out We Need a Mouse for a positive use of social media by our friend Luke Rosen and KIF1A.

151 - Season Premier: Pandemic Observations

Sun, 01 Aug 2021 17:14:22 -0400

Season 6 starts now with the introduction of a new segment called 'Picks for Season Six'. Today the Dudes pick their favorite podcasts of the moment.

Kyle: Conan O'Brien Needs a Friend

Sean: At the Table with Patrick Lencioni

Sean and Kyle talk about some of the things they've been up to this summer which leads to some observations about specific areas of life the pandemic has affected. Enjoy!

150 - Drugs, Turning 40 & The Future

Sun, 30 May 2021 22:40:44 -0400

Sean just turned 40. Happy Birthday Sean! Kyle turns 40 in a few months. This milestone brings a question into focus: What if the treatment or cure for FA doesn't come in our lifetime. Listen for thoughts from the dudes.

149 - An Elvis Presley Tribute Artist with Autism

Sun, 23 May 2021 23:40:54 -0400

Aaron Smith is uncomfortable on stage as himself, but as the King of Rock and Roll he owns the stage.

Aaron was bullied when he was young because he was different than other kids. He didn't care about the same things and sometimes he didn't say the right things. His mind was somewhere else.

Somewhere along the way he fell in love with the idea that people made a living from impersonating Elvis Presley. He gave it a shot and he was hooked.

Listen as Aaron talks about becoming an Elvis tribute artist amidst the challenges of living with autism.

Connect with Aaron: https://www.facebook.com/AaronElvistribute

Learn more about Autism: https://www.autismspeaks.org/

148 - Why Sean Hates His Gym

Sun, 16 May 2021 21:08:40 -0400

The Top 5 Pet Peeves get Sean a little worked up so he continues with a rant about his gym and accessibility. A conversation with the manager leaves Sean unsatisfied because he's not confident anything will change as a result of his feedback. He wants everyone to know that he remained calm during the interaction. We'll count that as a win!

147 - DD pt5: My view: Patients Get Medicine at Lowest Cost Possible - Tim Walbert

Sun, 09 May 2021 22:07:45 -0400

Tim Walbert is CEO at Horizon Therapeutics. He has been at the helm as they've taken several products to market. Listen as he talks about the different aspects of drug development and pricing. Tim also lets the dudes know that perhaps Sean's face needs to replace Kyle's on the wall at Horizon.

146 - DD pt4: Why Sean Baumstark Is Banned From Clinical Trials

Sun, 02 May 2021 22:14:07 -0400

As a clinical coordinator at Children's Hospital of Philadelphia (CHOP), Jen Farmer gained years of experience designing and operating clinical trials. Now as the CEO at the Friedreich's Ataxia Research Alliance (FARA) she uses that experience to design effective trials for the Friedreich's ataxia (FA) community - and she nicely puts Sean in his place when she states "the rules are there for your safety".

Jen shares the principles that guide clinical trials and a few tips for those who choose to participate.

FARA - curefa.org

145 - DD pt3: Pre-clinical & Tacos

Mon, 26 Apr 2021 01:28:32 -0400

The pre-clinical stage of drug development is largely about safety - answering the question 'will a drug be well tolerated in people?' However, Kristina Bowyer of Ionis Pharmaceuticals helps us understand that the patient voice should be integrated into every stage of the process, including pre-clinical. Plus, Sean loses his focus. Enjoy!

144 - DD pt2: Do Good and...with John Crowley

Sun, 18 Apr 2021 23:45:37 -0400

John Crowley is the CEO of Amicus Therapeutics. He is also a funny and compassionate rare disease Dad. Join us as we learn life lessons and how to start a company - and Sean learns that a million is quite large.

Amicus Therapeutics: https://www.amicusrx.com/

Extraordinary Measures (John's story), starring Brendan Fraser and Harrison Ford: https://g.co/kgs/u7uFgw

143 - DD pt1: Half a BILLION Dollars!?

Sun, 11 Apr 2021 22:46:14 -0400

This is the LAUNCH of the Two Disabled Dudes Drug Development Series. We have 5 experts lined up to field our questions about the process and how we as patients can insert our influence.

This episode is an overview of the Drug Development Process which helps us understand how to avoid spending half a billion dollars on a dead end.

Barbara Tate is the Chief Scientific Officer for the Friedreich's Ataxia Research Alliance (FARA). She has an impressive resume and a great sense of humor. She went from academic science, to big pharma, to venture capital, to nonprofit, and now she graciously shares her knowledge and wisdom with us.

Our next episode features John Crowley who is played by Brendan Fraser in the movie Extraordinary Measures.

142 - Rare Disease in India

Sun, 04 Apr 2021 15:21:22 -0400

How do we build an effective Global Rare Disease community? It all starts with sharing stories and ideas. Join the dudes as they hear Manish Gore's story about Alport Syndrome, and discuss the differences between the US and India and the Rare Disease World.

141 - Rude or Cooperative?

Sun, 28 Mar 2021 22:06:48 -0400

A few weeks ago, Sean read an engaging article from the Huffington Post called How to Know if You're an Interrupter or a 'Cooperative Overlapper'. The discussion of this article lead to an exploration of issues on the endless video conference calls that have become a big part of our lives lately.

Kyle still thinks the term 'Cooperative Overlapper' is just a made up term to make Sean feel better but you be the judge.

140 - A Sister's Perspective on Bullying

Sat, 20 Mar 2021 16:21:22 -0400

We sent Shelley a 2DD 2021 Desk calendar. She sent back pictures of her brother. That sparked a heartfelt conversation about her family and some of the experiences in her life with her brother Jeff. Join us as Shelley shares her experiences - you may end up with a perspective that makes you a better person.

Shelley Bowen is the Director of Family Services and Advocacy for the Barth Syndrome Foundation: barthsyndrome.org

139 - Where The Hell Are The Instructions?

Sun, 14 Mar 2021 00:59:14 -0400

Sometimes we wish there was an instruction manual for life's transitions. How do we decide when it's time to make a transition to a walker or wheelchair, power chair, hand controls...Listen as the dudes discuss and search for answers.

Sean's column; No Good Excuse, "The 'Right" Time Can Be a Moving Target With a Progressive Disease."

138 - We Only Have One Life to Live

Mon, 08 Mar 2021 00:18:24 -0400

"There is real power in not caring what others think."

Ben's Friends is an online social network for people with rare diseases. Ben Munoz started it after suffering an AVM in 2006 and undergoing multiple brain surgeries. During his recovery he was feeling alone and scared so he reached out to others to form Ben's Friends. Ben joins the dudes to impart his knowledge and wisdom from his years of leading Ben's Friends and the company he created.

137 - Rare Disease Day Special with Psychologist Dr. Al Freedman

Sun, 28 Feb 2021 15:13:33 -0400

To honor Rare Disease Day, we invited our friend Dr. Al Freedman back on to talk about how people living with Rare Disease (like Kyle and Sean) can remain proud even if they are not proud of everything about themselves. Dr. Al says a big part of it is gratitude and focusing on your strengths. Listen to hear all the details including the strengths of his son Jack who has been living with SMA for 25 years.

Reach out to Dr. Al at: freedmancounseling.com

136 - When It Hits The Fan - Part 1

Mon, 22 Feb 2021 01:29:03 -0400

What you we do when things do not go as planned. Your life feels like it's falling apart, and you need to rebuild part if not all of your vision for your future. The dudes have a few thoughts on how to proceed based on the rebuilding they've had to do in their lives.

136 - When it Hits The Fan - Part 2

Mon, 22 Feb 2021 01:11:47 -0400

**This is a 2 part episode so if you haven't listened to part 1, check it out.**

135 - Goals Don't Accomplish Themselves

Sun, 14 Feb 2021 23:19:36 -0400

In the last couple episodes we talked about the importance of forming a vision for your future. This time we take it a step further with a few thoughts on how to put that vision into action.

134 - Our Wants vs. Our Don't Wants

Mon, 08 Feb 2021 00:23:01 -0400

Last week we talked about the importance of creating a vision of what we want so we can work each day toward that goal.

An important piece of forming that vision is thinking about the things we don't want to avoid the ruts that are going to keep us from our goals.

Enjoy the conversation and don't forget to subscribe.

133 - Season 5 Premiere - What do You Want out of Life?

Sun, 31 Jan 2021 23:27:17 -0400

Where do you want to live? How much money do you want to make? How big is your house gonna be? Car? Job?

It's important to dream about these things but none of it is going to happen on accident.

In this episode Sean and Kyle talk about what they want out of life and the importance of taking steps today toward those things.

They also introduce a new segment for the show with their Top 5 Movies. Enjoy!

132 - 2DD Forum with the XLH Network

Sun, 03 Jan 2021 19:02:07 -0400

Meaningful conversations with friends are what we love - and that's what we thoroughly enjoyed about our 2DD Virtual Forum with the XHL Network. Listen to our 4 panelists for perspectives on living with XLH that relate to any walk of life.

If your organization is planning to engage your community in 2021 either live or virtually, the 2DD Forum may be a good fit. Check out an overview at twodisableddudes.com/forum and reach out to us at thedudes@twodisableddudes.com to discuss. Talk to you soon!

131 - 2DD Forum at Ultragenyx Rare Family Day

Mon, 14 Dec 2020 04:58:01 -0400

It is clear to these dudes that the patient is at the center of everything that happens at Ultragenyx Pharmaceutical. That's why we are proud to have moderated a panel at the virtual Ultragenyx Rare Family Day This Year.

https://www.ultragenyx.com/

130 - Season 4 Finale - More 2DD Grievances

Mon, 30 Nov 2020 03:15:21 -0400

We all know that Sean likes to complain, and apparently Kyle Does too. Listen to help The Dudes get a few things off their chest. They were a bit relieved after recording this episode and hopefully you will feel relieved after listening.

129 - She Created What She Needed - Effie Parks

Mon, 23 Nov 2020 04:48:00 -0400

Effie Parks immediately connected to rare disease podcasts when her son Ford was diagnosed with CTNNB1. However she soon caught up with all of the episodes and came to the end of her lifeline. So she created the thing that she needed the most. She connects with other rare disease parents and many others in the Rare Community through her incredible podcast Once Upon a Gene. Listen to this episode to get insight on the value of connecting to others.

128 - Addressing Rare Disease Mental Health - Psychologist Al Freedman

Sun, 15 Nov 2020 22:58:19 -0400

In episode 123, The Dudes asked why we tend to pull away when things get hard such as with a Rare Disease Diagnosis or another life changing event. The discussion did not end with a clear answer so Sean and Kyle Reached out for some professional help. Enter Dr. Al.

Albert Freedman, Ph.D. has a unique voice as a psychologist and the father of an adult son with a rare disease. He speaks at conferences nationally on challenges facing families of children with special health care needs, and provides consultation to health care & rare disease organizations, pharmaceutical companies, and schools. As a practicing psychologist in independent practice in the Philadelphia area, Dr. Freedman has provided counseling services to children, adolescents, adults, and families for over 25 years. Dr. Freedman's 25-year-old son, Jack, lives with Spinal Muscular Atrophy.

More About Dr. Al: https://www.freedmancounseling.com/albert-freedman-ph-d

Dr. Al's practice: www.freedmancounseling.com

127 - Does Disability Force Premature Decisions?

Mon, 09 Nov 2020 01:40:08 -0400

Kyle and Sean realize that the degenerative nature of Friedreich's ataxia (FA) has an impact on the timing of big decisions in their life. But does it cause them to jump into some things too quickly. Kyle thinks it caused him to get in over his head when he bought his first home. Is he doing it again? Listen as The Dudes wrestle with this topic.

126 - I'm Fine, Thanks - Chris Doveton

Fri, 30 Oct 2020 00:03:03 -0400

Finding the strength to keep moving after a heart wrenching loss is a prime example of living life beyond circumstances.

Chris Doveton and Anne are enjoying a loving marriage in the prime of their lives when Anne is diagnosed with a rare and fatal genetic disease. For ten years, Chris and Anne endure this terrible secret alone.

After Anne's death, Chris, ravaged by crippling grief, realises that his survival depends upon him ridding himself of his stiff upper lip. He must learn to open his heart and cry.

Saved from the depths of misery by life-saving therapy, he discovers a life beyond despair, rekindles his lapsed faith and finds love again.

Join us for a heartfelt conversation with Chris Doveton.

Learn more: chrisdoveton.com

Get the book on Amazon.

125 - "I know you're drunk, buddy"

Sun, 25 Oct 2020 22:58:33 -0400

Sean tells yet another story of someone thinking he is drunk, but this time the guy gets a little aggressive. Listen to hear the whole story and Sean's interactions with the landscaping company that the guy works for.

124 - Walk in My Shoes - A Journey With Cystinosis

Sun, 18 Oct 2020 22:24:56 -0400

Cystinosis is a rare disease that causes life altering damage to the kidneys, eyes, muscles, pancreas, and brain. Clint Moore's son, Chandler liver with the rare disease. That's why Clint walks 57 miles on 5/7 to raise funds and awareness. Listen as the dudes discuss some life principles and talk about Clint's moving documentary that tells his family's story.

Visit the Cystinosis Research Network: https://cystinosis.org/

Watch the Documentary: https://youtu.be/YHnoBbbg4Ao

123 - Why Do We Keep Our True Selves Hidden?

Mon, 12 Oct 2020 02:51:07 -0400

Anyone who has listened to this podcast before has heard The Dudes go on and on about the power of community and the importance of connecting to others. So why is our first reaction to pull away when things get hard? Denial? Pride? Self-preservation? Fear? Listen as the dudes try to break down this complex topic. They probably need some professional help...

This topic all started with a little column Sean wrote: https://friedreichsataxianews.com/2020/09/29/connecting-others-helps-us-move-forward/

122 - Red Tape is Easier With Help

Sun, 04 Oct 2020 23:55:25 -0400

Government programs such as Social Security provide essential services for people with disabilities. But navigating through the bureaucracy can be a nightmare. That's why there are companies such as Allsup Disability Insurance Services and people like Mary Dale Walters - to help us make sense of it all! Listen as she gives us a great start to the conversation and provides resources for where to find out more.

https://www.allsup.com/

121 - How to Join the rideATAXIA Global Challenge

Mon, 28 Sep 2020 00:32:15 -0400

Using our collective effort. participants in the rideATAXIA Global Challenge will power the team around the globe in 30 days. During this time the team will be introducing all of us to the brilliant minds behind the effort to treat and cure Friedreich's Ataxia.

Get more info and register at rideataxia.org/globalchallenge or join Team #CrankinWithKyle HERE.
Join us on Strava to contribute to the goal of traveling around the globe!
1. Cycling - https://www.strava.com/clubs/710903
2. Running - https://www.strava.com/clubs/617708
3. Any other activity via the activity log - https://rideataxia.org/files/GC-Activity-Log.pdf

120 - What is Alport Syndrome? - Kevin Schnurr

Sun, 20 Sep 2020 23:32:55 -0400

In 2012, at the age of 26, Kevin Schnurr was unexpectedly diagnosed with Alport syndrome after being rushed to the hospital with high blood pressure. After two years on peritoneal dialysis, he received a living donor kidney transplant from a close friend in May 2014. Kevin’s desire to help others in the rare disease community led to him volunteering at Alport Syndrome Foundation (ASF) in 2012. He later served in a position as ASF Social Media Specialist in 2014 and part-time Patient Outreach Coordinator in 2016. Kevin currently serves as the Director of Communications & Patient Engagement (since Oct. 2019). He has facilitated the Teen Program at ASF Family Meetings, represented ASF at patient advocacy events and conferences, and co-moderates the ASF Facebook Support Group Page. In his free time, Kevin loves playing guitar, attending concerts, and collecting/voraciously reading books.

Website: alportsyndrome.org Socials: https://www.facebook.com/alportsyndromefoundation/

https://twitter.com/AlportSyndFndn

https://www.instagram.com/alportsyndromefndn/

https://www.youtube.com/user/TheASFoundation

Other links: https://www.organdonor.gov/ https://www.donatelife.net/

119 - Are You Messy Like Kyle or Neat Like Sean?

Sun, 13 Sep 2020 21:52:05 -0400

Sean and Kyle are polar opposites in so many different ways. But this is a strength rather than a weakness. This week the Dudes discuss their differences and why they work well together.

118 - How We Can Serve the Community Through Google's Project Euphonia - Bob MacDonald

Sun, 06 Sep 2020 22:34:18 -0400

Like it or not, communicating with smart devices has become a huge part of our lives. For people with disabilities, this communication can be an essential part of making it through the day. However these devices have a hard time understanding speech that is outside what they've heard before.

Google has launched an effort called Project Euphonia to retrain our devices to understand people who have speech impairments. Bob MacDonald is one of the leaders of the project and he joins The Dudes to talk about the project and how we can all help out.

117 - What does Team Gleason have in Common with Google?

Sun, 30 Aug 2020 22:36:28 -0400

Blair Casey is the Assistant Executive Director of Team Gleason - an organization founded by former NFL player Steve Gleason. The organization is committed to providing for and finding solutions for persons living with ALS. Team Gleason’s staff and volunteers work tirelessly every day to empower those living with ALS to live with continued purpose and as productively and independently as possible.

Blair joins the Dudes to talk about their work to support Google's Project Euphonia and how we can all work together to improve voice recognition for people who experience disarthria.

To find out more and contribute your voice samples to the effort, visit: teamgleason.org/projecteuphonia

Bonus Conversation With Friends!

Wed, 26 Aug 2020 11:23:47 -0400

BONUS episode!

We received a lot of comments about Episode 114 (the encounter with Debora) so we invited a few friends to join us to talk about the sometimes awkward interactions with strangers who may be uncomfortable with disability.

Friends who joined us are Shandra and Christian from Florida, Leona from Colorado, and Effie Parks (host of the Once Upon a Gene Podcast) from Seattle.

This bonus episode is unedited. Enjoy!

116 - What would you change about yourself if you could?

Sun, 23 Aug 2020 20:02:29 -0400

If you could change something about yourself, what would it be?

In this episode, the dudes tackle this question as it relates to disability or as it relates to life in general. Listen and reach out if you have thoughts about this subject.

115 - Leading the VEDS Movement - Katie Wright

Sun, 16 Aug 2020 23:15:32 -0400

Where do we start after a life threatening diagnosis. Start a YouTube Channel of course! That's what Katie did. She started connecting with the Vascular Ehlers Danlos Syndrome (VEDS) community and now she leads the VEDS Movement for the The Marfan Foundation.

Find out more at thevedsmovement.org.

And find out more about the people behind the movement at translucentone.blog

114 - Don't Judge a Dude by his Wheelchair

Mon, 10 Aug 2020 00:58:48 -0400

Curiosity about someone's disability often comes from a good place but depending on how it is delivered, it can create awkward or even offensive situations.

This week the dudes struggle with how to react in these awkward situations.

It's good for someone to ask questions but there is a line somewhere. Listen for real life stories and honest conversation.

113 - How do we Define Each Other?

Mon, 03 Aug 2020 00:21:34 -0400

In the opening episode of Season 4, Sean and Kyle admit to being a little lazy lately and then commit to getting back on the wagon. That's the power of accountability! And it's the power of their commitment to their listeners - one insightful episode per week for the next 4 months!

The meat of the episode is all about how we tend to define ourselves and each other by the immediate circumstances. The Dudes postulate that perhaps we should be defined by the entirety of what we do rather than one or two things.

Let them know what YOU think:

instagram.com/2ddpodast twitter.com/2ddpodcast facebook.com/twodisableddudes

112 - Season Finale - Different Reactions to Coronavirus

Mon, 25 May 2020 02:02:08 -0400

Why do we all react differently to a situation - especially when the stakes are high, such as the current situation with Coronavirus? Sean and Kyle have a few thoughts to share but first we must hear about Sean's recent cluster at physical therapy, and Kyle explains how it is possible to lock yourself out of your own bathroom.

Season 4 starts in August but there are 111 other episodes to enjoy so check them out. We hope you have a great summer!

111 - Copiing in Times of Uncertainty with Team Amicus

Mon, 18 May 2020 01:22:17 -0400

We’ve had the privilege to work with Amicus Therapeutics on multiple occasions and each time we are moved by their commitment and consistent execution of their corporate mission. This virtual patient panel they facilitated is no exception! Three weeks into the company’s work-from-home arrangements due to COVID-19, Amicus wanted to continue connecting their team members with each other and the patient communities they work on behalf of. We were honored to moderate the conversation between Naomi (from the UK), Mike (from New Jersey) and David & Karen (from Arizona) for the global Amicus team and their families. The panelists helped us laugh, encouraged our resilience and inspired us to maximize our time as we embrace the rare disease journey and cope in times of uncertainty.

110 - How Rare Diseases Impact Carriers - Taylor Kane

Mon, 11 May 2020 03:14:42 -0400

After a brave fight, Taylor Kane lost her Dad to a rare disease called Adrenoleukodystrophy (ALD) when she was 3 years old. She subsequently found out that she was a carrier of this X-linked disease.

For a long time it was believed that "carriers don't get symptoms." However, that myth has been busted and Taylor Kane has a clear mission in life. She started a non-profit called Remember the Girls that builds support and community for carriers of X-linked diseases. What is X-linked? The Dudes had the same question and you'll have to listen to find out.

As much as anything in life, Taylor Kane loves to connect with other young carriers of Rare Diseases because connecting with someone who truly understands you is "like no other." You can connect with her by reading her book Rare Like Us, and you can find her an Remember the Girls on social media at:

Remember the Girls: Web: https://www.rememberthegirls.org/ Facebook: https://www.facebook.com/remembergirls Twitter: https://twitter.com/remember_girls Instagram: https://www.instagram.com/rememberthegirls/

Taylor Website: https://www.taylorkane.com/ Twitter: https://twitter.com/taylorkane23 Instagram: https://www.instagram.com/taylorkane23/ LinkedIn: https://www.linkedin.com/in/taylorckane/

109 - Hawk's Eye View on Duchenne MD - Hawken Miller

Mon, 04 May 2020 01:50:10 -0400

Hawken Miller is an accomplished young writer with a clear purpose in life. He is an incredible representative for the Duchenne Muscular Dystrophy Community and he has a passion for the work of CureDuchenne.

Writing is his chosen medium and he has a keen interest in the e-sports world. He uses video games to connect with others in the Duchenne Community and he uses writing to explain video games to the every day person. Hawken is a recent graduate of USC and his journalism experience includes The Sacramento Bee, KTLA, The Washington Post, and Bio News Services.

Visit Hawken's website: http://hawkenmiller.com

Read his most recent columns: https://musculardystrophynews.com/category/hawks-eye-view-a-column-by-hawken-miller/

And find out about the work of CureDuchenne: https://www.cureduchenne.org/

108 - #QuarantineLife

Sun, 26 Apr 2020 22:30:54 -0400

As everyday life continues to be dominated by coronavirus Quarantine, The Dudes discuss the pros and cons of the situation. They prognosticate about how things might change because of this pandemic. Tune in and play along with the thought experiment.

107 - Patient focused Drug Development - James Valentine

Mon, 20 Apr 2020 01:33:22 -0400

A brief summary of this episode

106 - No Arms, no Legs, no Problem - Gabe Adams

Mon, 13 Apr 2020 01:04:59 -0400

Gabe Adams was born without arms or legs due to HanHart Syndrome. He joins us and shares so much about being "different" from other kids, finding his independence, dating, his upbringing in the Mormon-Christian church and so much more. Gabe is no stranger to people pointing, staring or talking negatively in extreme and cruel ways. Still, he has defined and recognizes his own value and has built a platform to inspire and encourage others. Don't miss this interview!

105 - The Dudes Vent

Sun, 05 Apr 2020 23:23:30 -0400

Sometimes frustrations get the better of us. And in quarantine, we are all on edge a little more than usual. In this episode, the dudes put their focused conversation aside for a bit to vent a few frustrations and ramble aimlessly. Enjoy :-)

104 - His Brain Injury Created a New Mindset

Sun, 29 Mar 2020 20:15:00 -0400

Jason Levy was a well-paid Silicon Valley executive when multiple accidents caused severe Traumatic Brain Injury. His whole life changed and he found himself in much different circumstances than he had envisioned for his life.

Through his struggles, Jason realized that he must let go of the old Jason and embrace the new one. Once he realized this, he started to build a satisfying life on his new path.

Join us to learn lessons that anyone can apply to their own situation.

103 - Giving Back After Spinal Cord Injury

Sun, 22 Mar 2020 14:53:31 -0400

Beth Kolbe was injured in a car accident and lost the use of her lower body. Subsequently she went to Harvard, swam in the paralympics, received a law degree from Stanford, practices healthcare law in Washington DC, and gives back to the disability community through pro-bono work. She's kind of a big deal - listen to hear her perspective.

102 - Four Tips for Making Decisions

Sun, 15 Mar 2020 16:10:00 -0400

We encounter decisions constantly. Some are simple with clear answers like "Should I do the dishes today?" but some are complex and consequential like "Should I cancel upcoming travel due to coronavirus?".

The Two Disabled Dudes believe that Life is about How We React. How we think when we are faced with decisions and how we weigh out the potential consequences can have an impact on how we react.

In this episode, the dudes discuss 4 simple tips to help us think about the decisions in our lives:

Remove the emotion from the equation - Many tough decisions in our lives evoke abundant emotion which can often cloud our reasoning. If we can temporarily remove emotion from the situation as we are thinking about the decision, it will help us focus on the facts and make an objective decision.
Ask yourself "How does this affect the outcome?" - Sean and Kyle use the example of making the decision to sit down in a wheelchair or purchase an adaptive van. They talk about the face that these decisions do not change hte goal or the purpose in life, they just change the method we use to get there.
Remove finances from the situation - If we think about it, it's clear that there are things in life that are more valuable than money. Sometimes, we need to let our health, time, or relationships win out over financial considerations in our lives. In this episode, Sean suggests that we can change the way we think about a decision by removing finances from the situation. He's not saying that we need to stop thinking about finances all together but if we temporarily remove money from the situation in our mind, it can help us think more clearly about things that may matter more to us.
Discuss with close friends and family - This is something our past Guest, Jeremy Cowart talked about. Our friends and family know us best, and when we are thinking about a tough decision it is valuable to talk with them about so we can solidify our thinking in our own heads, and get a third party perspective who might be able to provide sound advice.

This is only a taste of the conversation. Listen to this episode and see if you can relate - and then leave a comment below with your techniques for confronting the decisions in your life.

101 - Funding Research One Cookie at a Time

Sat, 07 Mar 2020 02:08:10 -0400

Cookies 4 Cures bakes and sells cookies to fund research for rare pediatric diseases.

100 - Jeremy Cowart

Sat, 29 Feb 2020 21:56:35 -0400

A brief summary of this episode

099 - The Scarcity Mindset

Mon, 24 Feb 2020 05:43:55 -0400

Find out how the scarcity mindset can limit your thinking.

John Maxwell on the scarcity mindset: https://www.success.com/john-c-maxwell-6-tips-to-develop-and-model-an-abundance-mindset/

098 - The Pharma/Patient Relationship - Opportunities to Improve - Andra Stratton

Sun, 16 Feb 2020 14:23:40 -0400

Andra Stratton was diagnosed with a rare disease called Lipodystrophy that makes her look very athletic and fit due to her lack of adipose tissue. Appearance is deceiving in this case because Lipodystrophy often causes organ failure and sudden death.

097 - A life of Ehlers Danlos Advocacy - Lara Bloom

Sat, 08 Feb 2020 22:48:50 -0400

We are often surprised by the twists and turns of life - especially when confronted with disability.

Lara Bloom was surprised when she was diagnosed with Ehlers Danlos Syndrome. She was even more surprised to meet a man who helped her find her purpose - launching The Ehlers Danlos Society.

Lara is president and CEO of The Ehlers Danlos Society and she is a global leader in the rare disease community.

Lara has taken life's twists and surprises and turned them into a beautiful life of service to others.

Join us for laughter and a conversation about what it means to build and sustain a life of advocacy.

096 - Owning up to your shortcomings

Sun, 02 Feb 2020 21:09:58 -0400

Welcome back! This Season 3!

When we get annoyed or mad at others it is important to do a little self-assessment to let the situation teach us how not to act in the future. If someone is doing something you don't like, perhaps it is important to avoid doing that same thing to others.

With a few real-life examples, Sean and Kyle explore this topic in the hopes of improving themselves an giving the listeners (you!) something to think about.

095 - Season 2 Finale - Are you Determined or Stubborn?

Sun, 24 Nov 2019 22:08:26 -0400

We are closing out this season with a deep conversation about purpose and commitment and how we reconcile our efforts if we do not quite reach our our goals. We had fun with this one. Enjoy!

094 - 2DD Update on 2019 Goals

Mon, 18 Nov 2019 03:25:54 -0400

Kyle and Sean invent a new game with news headlines and then catch up on their 2019 goals. Also, the two dudes circle back on a conversation from a previous episode about "hidden cities" on flight itineraries.

093 - Online Dating for People With a Disability

Sun, 10 Nov 2019 22:40:15 -0400

Bumble is not specifically a disability dating website/app, but it worked for Sam and Emily. Sam lives with Friedreich's ataxia (FA) and he uses a wheelchair but they matched, connected, and the rest is history. Listen to this episode to learn their tips and experience for online dating for people with a disability.

092 - Why Humor is Essential with Dr. David Fajgenbaum

Sat, 02 Nov 2019 21:20:32 -0400

First, Sean shares the grim story about fracturing his hip. If you'd like details about the incident and the prognosis for the future, have a listen. Then Dr. Fajgenbaum shares his perspective on why humor is important while facing challenges in life. Listen up!

091 - Chasing Our Cure with Dr. David Fajgenbaum

Sun, 27 Oct 2019 22:58:23 -0400

Dr. David Fajgenbaum has a rare disease called Castleman's Disease which put him on his death bed 5 times as he was in medical school and earning his MBA. He repurposed a drug to treat himself and is now the world's leading researcher in Castleman's Disease. He is now helping other rare disease groups by training them to use his collaborative approach to research. He also just published a book called Chasing My Cure. Please enjoy our conversation with our friend Dr. David Fajgenbaum. @DavidFajgenbaum

090 - LIVE at the 2019 Global Genes RARE Patient Advocacy Summit

Mon, 21 Oct 2019 12:03:53 -0400

A brief summary of this episode

089 - Creating Community for Young Adults with Our Odyssey

Thu, 10 Oct 2019 23:16:15 -0400

Our Odyssey is a nonprofit organization designed to provide support for young adults living with rare and chronic diseases. Listen to learn more from the founders Seth, Kristina, and Anna.

088

Sun, 06 Oct 2019 21:53:55 -0400

Transitions are difficult no matter what your challenges are in life. If your challenges include a progressive neurodegenerative disease, your transitions will probably include mobility devices including walkers, wheelchairs, and scooters. In these transitions it is important to see these devices as tools to accomplish the things you want to get out of life.

087 - Conquering White Mountain

Sun, 29 Sep 2019 21:20:45 -0400

In August, we joined team de:terminence for an off-road adventure! White Mountain is one of California's highest peaks, reaching over 14,240' in elevation. Recognized as one of the easiest 14'ers and probably the most bike-able, we called our friends at Catrike and went for a ride.

Listen to find out what happened!

086 - How to Gain Control Over Life - Kipp Wesslen

Sun, 22 Sep 2019 18:48:42 -0400

Kipp Wesslen was diagnosed with an unknown type of Ataxia and he has become an amazing adaptive athlete. He has learned to fight back against his disease and gain control over his life through adaptive sports.

085 - Beyond the Finish With the Pease Brothers

Sat, 14 Sep 2019 23:39:54 -0400

Kyle and Brent Pease are amazing athletes, period. They support each other and push each other to amazing heights including an official finish at Ironman Kona, the most prestigious finish line in Ironman. Kyle happens to have Cerebral Palsy and they compete as a team. Listen to this episode to hear a shining example of living beyond circumstances.

084 - How to Stop Limiting Yourself

Mon, 09 Sep 2019 06:02:44 -0400

We can stop limiting ourselves by changing our perception of how others view us.

083 - Reasons to Push Your Limits

Sun, 01 Sep 2019 06:02:13 -0400

Push it!

082 - What are you proud of? - Muffy Ritz

Tue, 06 Aug 2019 00:50:39 -0400

Muffy Ritz completed "the world's toughest bike race" - Race Across America 3 times as a solo competitor. But that's not what she's most proud of. Listen to find out what it is.

081 - Be Yourself - LIVE at Amicus Therapeutics

Mon, 01 Jul 2019 00:47:42 -0400

The teenage years are some of the toughest years most of us live through. Aside from the typical peer pressures and desires to fit in, imagine facing middle and high school with a rare disease. That’s exactly what these three girls have done or are doing right now. Meet Caterina, Maya & Annie as we talk about life with a rare disease. From pay phones and boy bands, to navigating school schedules and surgeries, these three girls talked with Kyle & Sean in front of the committed and supportive staff at Amicus Therapeutics. Their authenticity and outlooks on life are inspiring and enriching to anyone who hears them share. In this episode you’ll be encouraged by their unifying message: Be Yourself! We are grateful to Amicus Therapeutics for allowing us to be a part of their global-staff conference, held at the Make-A-Wish Wishing Place in Monroe, NJ. Additionally, we are thankful for and forever touched by the willingness of Caterina, Maya & Annie to join us on stage for this forum.

080 - Accountability is the key to getting stuff done (GSD)

Mon, 10 Jun 2019 01:35:07 -0400

This podcast would have never happened if we weren't keeping each other accountable. There are many other examples in our lives where accountability is the key to follow through. Join us as we discuss this and the future of Two Disabled Dudes.

079 - Cindy Kolbe Interview

Mon, 03 Jun 2019 06:24:03 -0400

A brief summary of this episode

078 - South Dakota

Sun, 26 May 2019 16:55:41 -0400

Kyle Attended the Professional Patient Advocates in Life Sciences (PPALS) training a few weeks ago. Immediately following, Sean joined for a screening of The Ataxian to kick off the Great Plains Rare Disease Summit. Join us for the conversation!

077 - Thriving Blind with Kristin Smedley

Mon, 20 May 2019 01:45:32 -0400

Kristin smedley was a new mother with a dream life when she found out her baby was blind due to a rare disease. Then she was dealt a second "dose of blindness" a couple years later when her second son was blind too. All the hopes and dreams she had for her life were crushed.

It took several years but she learned to follow her kids' lead to navigate the world of blindness. And she learned to Set Extraordinary Expectations through her experiences.

076 - Our Moms

Sun, 12 May 2019 01:56:08 -0400

Elaine Baumstark and Diane Bryant join the dudds to talk about how two pains in the neck turned into two really good looking and extremely intelligent young men.

Seriously, we are grateful for Moms who continue to be wise and supportive influences on our lives. Happy Mothers' Day everyone!

075 - The Relationship Between the Patient and the Scientist

Mon, 06 May 2019 03:14:41 -0400

Understanding the science behind your disease, condition, or challenge is intimidating and many times the question is "Why should I? What's the point?" However when we do make the effort to understand, we may find out that it becomes an incredibly important and empowering part of our journey.

074 - Jeff Bell Part 2 - Adversity to Advocacy

Sun, 28 Apr 2019 19:42:37 -0400

In part one of this two part interview, Jeff talked about the chalenges OCD brought to his life. In part two (this epidode) Jeff talks about how he has used his adversity to create a platform for advocacy for himself and others.

073 - Jeff Bell Part 1 - Adversity 2 Advocacy

Sun, 21 Apr 2019 18:58:44 -0400

Jeff Bell lives with Clinical OCD and he has used it as an opportunity to formulate an approach to conquering challenges and help others do the same.

072 - Reasons Versus Excuses

Sun, 14 Apr 2019 23:55:39 -0400

The dudes discuss the difference between a reason and an excuse based on one's own personal principles.

071 - Photos from the first part of 2019

Mon, 08 Apr 2019 01:54:20 -0400

Sean read Kyle's book (Shifting into High Gear) recently and he had a few questions and discussion points.

Links to order Kyle's book are ar kyleabryant.com

Additionally Sean and Kyle explore their photos for their top three of 2019 so far.

070 - Rob Long

Mon, 01 Apr 2019 06:11:50 -0400

A brief summary of this episode

069 - Things We Like

Sun, 24 Mar 2019 15:17:46 -0400

Kyle's first experience as an Uber driver. And the dudes discuss 3 things each that make their lives better.

James Miller | Lifeology

Mon, 18 Mar 2019 12:46:57 -0400

James Miller is a licensed psychotherapist and the executive producer and host of the nationally broadcasted and syndicated radio show: James Miller Lifeology. James has been in the mental health field for over 22 years. After 13 years in private practice James left his successful practice in the Washington, DC area to follow his own dreams. He created James Miller Lifeology where he globally helps people simplify and transform their spirit, mind, and body.

067 - He's an Athlete No Matter the Circumstance - Glenn Hartrick

Mon, 11 Mar 2019 01:32:00 -0400

Glenn hartrick has been an amazing athlete for a long time, setting records as an able bodied triathlete. He was hit by a car during a training ride and was immediately paralyzed. He is now an Ironman para triathlete. His addiction to endurance knows no bounds.

066 - Death March for Ataxia with Mike De Rosa

Mon, 04 Mar 2019 00:19:32 -0400

A brief summary of this episode

064 Official - Hasan Banks

Wed, 20 Feb 2019 05:59:00 -0400

A brief summary of this episode

065 - Can of Worms

Sun, 17 Feb 2019 16:06:13 -0400

A brief summary of this episode

Grievances with the Dudes

Mon, 11 Feb 2019 00:28:38 -0400

We all get annoyed at lots of things in life. Laughing about these things can put our circumstances in perspective.

062 - Only You Have the Power to Destroy Your Life - Gabriel Cordell

Mon, 04 Feb 2019 03:49:48 -0400

Gabriel Cordell was paralyzed due to a car accident. He became the first person to push his everyday wheelchair across the entire USA. gabrielcordell.com. Check out the documentary at rollwithmemovie.com.

061 - Just Do It!

Mon, 28 Jan 2019 01:40:55 -0400

Getting started is the hardest part. Even if you get started down the wrong path you can start over or correct your direction. Either way, you're still farther than if you didn't do anything.

060 - Mind Games and Disability

Sun, 20 Jan 2019 21:46:56 -0400

In this episode our conversation is inspired by a listener email! Maria Sobotka reached out to us via Facebook (facebook.com/twodisableddudes) and she cut straight to the chase, asking four direct and specific questions:

What does having disability mean to you?
Do you even feel disabled?
Are you ashamed or proud of being disabled?
Has having FA changed your view about disability?

We tackle these questions and share a few resources that have helped developed our own perspectives.

One thing we mention is a TEDx talk we’ve both enjoyed in the past, but we couldn’t remember the speaker or the title at the time of the recording! So, Stella Young is who we refer to and her hilarious and insightful talk can be seen here: https://www.youtube.com/watch?v=8K9Gg164Bsw

Two Dudes' Goals for 2019

Sun, 13 Jan 2019 15:30:39 -0400

Set them, don't forget them. Be accountable to yourself.

058 - 2018 Year Review

Mon, 31 Dec 2018 05:40:45 -0400

2018 Was awesome.

057 - The Nomadic Dreamer

Mon, 17 Dec 2018 02:11:13 -0400

Sarah Dodd

056b - Australia Researcher Q&A

Sun, 02 Dec 2018 16:53:37 -0400

Smart Doctors.

056a - AUS Intro Story

Sun, 02 Dec 2018 07:29:26 -0400

A brief summary of this episode

Exploring Life Transitions with Kyle and Sean

Mon, 19 Nov 2018 00:52:07 -0400

Wheelchairs, walkers, trikes...

054 - Travis Flores

Fri, 02 Nov 2018 03:35:41 -0400

A brief summary of this episode

053 - Nutrition with Shana and Donna

Thu, 18 Oct 2018 01:03:05 -0400

Nutrition

052 - Surviving Sepsis Unshattered with Carol Decker

Fri, 05 Oct 2018 00:59:59 -0400

Carol is a badass

051 - PR with Heather Burgett

Sat, 22 Sep 2018 15:59:27 -0400

PR tips!

050.Kyle - Sean Interviews Kyle

Sun, 09 Sep 2018 15:26:26 -0400

Kyle is the man.

050.Sean - Kyle Interviews Sean

Sun, 09 Sep 2018 15:21:54 -0400

Sean is the man.

049 - Little Levi & Miracle Flights

Sun, 26 Aug 2018 06:28:15 -0400

Miracle Flights & Little Levi

048 - Rare Disease Advocate Luke Rosen, KIF1A.org

Sun, 12 Aug 2018 21:48:58 -0400

048 - Rare Disease Advocate Luke Rosen, KIF1A.org

047 - Barry Rice, Cycle Ataxia

Sun, 29 Jul 2018 01:11:23 -0400

Ireland

046 - A conversation With the Dudes

Sun, 15 Jul 2018 23:38:18 -0400

Complaints and updates.

045 - sick Chick Shira Strongin

Sun, 01 Jul 2018 02:02:53 -0400

She is incredible.

044 - Francisco Sanchez - A Doctor With SCI Paying it Forward

Thu, 14 Jun 2018 03:06:26 -0400

A brief summary of this episode

043 - Nic Noviki - Easterseals Disability Film Challenge

Mon, 04 Jun 2018 01:19:13 -0400

Nic Novicki is an actor, comedian and producer who has performed on six continents. He is founder and director of the Easterseals Disability Film Challenge which gives filmmakers – with and without disabilities – the opportunity to collaborate and tell unique stories that showcase disability in its many forms and support Easterseals’ goal to change the way the world defines and views disability, so everyone can reach his or her potential.

042 - On Being Savage with Les Ballard

Mon, 21 May 2018 02:57:39 -0400

Les is a past recipient of the Ataxian Athlete Initiative (AAI) - curefa.org/aai

041 - Spring Cleaning of the Mind

Sun, 06 May 2018 20:17:34 -0400

**CHECK OUT OUR NEW ONLINE STORE AT: twodisableddudes.com/shop**

It's time to clean out our heads. So in this episode we cover multiple topics including Kyle's recent interview on the Know Ataxia Podcast (https://apple.co/2HTFWy7), clinical trials, goals for the year (including today's release of our NEW ONLINE STORE! twodisableddudes.com/shop), #DontForgetTheCrew dontforgetthecrew.com), and Friedreich's ataxia awareness. It's a lot in only 40 min. Enjoy!

040 - Breaking the Paralyzed Paradigm, with Arash Bayatmakou

Sun, 22 Apr 2018 22:25:56 -0400

We are joined in this episode by Arash Bayatmakou, author of the new memoir Little Big Steps. Arash talks to us about his sudden transition to the world of disability, after a spinal injury when he was 30 years old left him nearly paralyzed. He was shocked to discover that medical treatment of spinal injuries hadn’t changed in twenty years. Rather than succumb to the paradigm that the medical field sentenced him to, Arash decided to fight for hope. He defines acceptance as the ability to cope with your life in the present moment, but not being complacent and nodding along when you are told what to expect in the future.

“Be okay with ambiguity.” -Arash

Arash started a nonprofit called No Limits Collaborative, which seeks to help people with spinal disorders pursue activities that they didn’t think was possible.

If you are in the area, please join Arash on Sunday, May 6, 2018, at 7pm, at the Blue Stockings bookstore in New York City for a book signing. Tell him The Dudes sent you.

Check out Arash Bayatmakou’s website at arashrecovery.com for more info on him, his book, and his nonprofit.

The first three of you, our listeners, to email us at thedudes@2disableddudes.com with the subject line either “Team Sean” or “Team Kyle” will receive a link to download the audio copy of Arash’s book FOR FREE. We’ll let you know which team wins.

How to Ward Off Decrepitude

Sun, 08 Apr 2018 21:51:45 -0400

Aimee Lyons of CrossFit KOP

038 - Ilana Jacqueline

Wed, 21 Mar 2018 04:13:47 -0400

Surviving & Thriving with an Invisible Chronic Illness.

037 - RDW Panel For The Ataxian

Mon, 12 Mar 2018 06:28:51 -0400

Q & A sessions following a screening of The Ataxian at RDW in Washington, DC.

036 Patient engagement live at Reata

Wed, 21 Feb 2018 06:57:41 -0400

With Kara Eichelkraut

LIVE at Reata Pharmaceuticals

Mon, 05 Feb 2018 22:41:49 -0400

A brief summary of this episode

Katie Stevens President, Dyskeratosis Congenita Outreach (DCO)

Sun, 28 Jan 2018 01:59:10 -0400

DCO

033 - Steps to Bust Your Funk

Mon, 15 Jan 2018 02:16:46 -0400

A brief summary of this episode

032 Behind The Scenes

Mon, 01 Jan 2018 03:57:57 -0400

Interview featuring Jake & Matt.

031 - Anniversary Episode! Listener Appreciation

Mon, 18 Dec 2017 13:05:15 -0400

We began this project a year ago, hoping to give a voice to those who choose their own attitudes in the face of challenges that life serves up. So here we are, 30+ episodes later, and the 2 Dudes have come to realize how the podcast is kept alive and strong by the group of people it brings together!

In this, our one year anniversary episode, we focus on the fact that the podcast is held up by you as a listener. And you are the reason why we can’t wait to continue this next year!

In this episode, we interview four of our listeners from different areas of the country: Dan Parker-King; Heidi Behr, Nygel Lenz, Tyler Porter, and Mary Nadon Scott.

We ask our guests for their favorite moments and interviews from the show-what keeps them coming back, and we have a few flashbac

030 - 000 Rerun

Mon, 04 Dec 2017 06:29:13 -0400

One of our past favorites as we prepare the 1yr anniversary episode!

029 - Wonderful and Different with Paul Avery

Sun, 19 Nov 2017 15:41:29 -0400

“It’s a wonderful life; it’s just a different life.”

We interview Paul Avery, CEO of World of Beer; former COO of the parent company of Outback Steakhouse, father of two daughters diagnosed with FA; and a member of the board of directors at FARA.

The transition from being in the business of running successful restaurants to becoming forefront in the research and treatment of a rare disease was a sudden and unexpected change: but not a shift Paul hesitated to make. For him, his love for and concern of the well-being of his daughters, diagnosed with FA, made his decision to join the research and development of a treatment of FA a natural fit.

And in Paul’s willingness lies a lesson for all of us. We ourselves may not have a background in medicine, biology, or genetics. We may get overwhelmed at becoming part of whatever team is calling to us.

Paul was able to use his economic and negotiating skills to become a powerful voice in FARA. Not to mention the unbelievable benefits Outback Steakhouse and other companies under his authority have provided at FARA events.

What is your calling in life? Could the fact that your background seems unrelated to that be not a weakness, but a strength?

We want to thank Paul Avery for reminding us that strength and accomplish comes from everyone bringing their diverse skills to the table.

028 2DD Challenge Check-in

Mon, 13 Nov 2017 20:41:46 -0400

Kyle & Sean's progress on their 30-day challenges.

Episode 027

Sun, 05 Nov 2017 21:25:58 -0400

This Episode features Kyle & Sean facilitating a panel of three others living with FA, Kate (14), Michael (17) and Jean (54). This live recording took place in Tampa, Florida in September 2017, leading up to the FARA Energy Ball.

026 - Self Discipline

Sun, 22 Oct 2017 19:09:40 -0400

In this episode, we get back to the basics. No guest, just the 2 Dudes hanging out and talking about a topic very important to us: self-discipline.

Living with a disability is often frustrating. Maybe that’s an understatement. When so many normal daily activities are impossible, or at least difficult, to do independently, we are tempted to develop a victim’s mindset.

But that’s not who we are, and that’s not who you are. The key to unlocking your own greatness is self-discipline.

Sean has a great way of visualizing self-discipline. He imagines that our ideal self asks us if doing whatever we are doing at the moment, helps us advance to where we want to be. An example he uses is if we want to look great for the summer, will eating whatever we’re going to eat or skipping the next workout or going to the gym right now help us get there?

Kyle talks about a great book he recently read called Living with a SEAL. In it, an ordinary man trains with a Navy SEAL for a month, after seeing the SEAL compete in an ultra-marathon. In the harsh cold of winter, the book details the grueling training sessions, mixed in with a lot of laughs. The book serves as a perfect example of what it looks like to behave according to self-discipline.

There are many areas that both of us want to be better in - so as we get close to the one-year anniversary, we invite you to join us in trying to better ourselves!

The first thing we are doing is comprising a list of 5 things each. These are the 5 most important lessons we’ve learned in life. We want to hear yours too! So reach out to us at thedudes@twodisableddudes.com. We look forward to hearing your lessons!
We’re also starting the 2DD Push-up Challenge. We (Kyle and Sean) are going to do 100 push-ups everyday for a month. Keep track of our progress here: http://twodisableddudes.com/2dd-challenges/. And feel free to join us!
We’re also going to be logging what we eat for the next 30 days. Join us or track our progress here: http://twodisableddudes.com/2dd-challenges/

Self-discipline is all about making your future self proud of the actions you are taking now. So, no time for excuses. Be the best version of yourself right now!

025 - Leadership with Drew Dudley

Fri, 06 Oct 2017 20:34:51 -0400

A brief summary of this episode

024 - The Parent Perspective with Tom Hamilton

Tue, 19 Sep 2017 01:07:11 -0400

Tom Hamilton spent 25 years on Wall Street and when his daughter was diagnosed with Friedreich's ataxia (FA), he started using all his knowledge and expertise to fight Rare Disease. Tom is on the Board of Directors for the Friedreich's Ataxia Research Alliance (FARA), he is a founding Board Member for Chondrial Therapeutics, he is Executive Producer of The Ataxian, and co-founder of the CureFA Foundation.

023 Patrick Lawrence & CAF

Mon, 11 Sep 2017 04:35:11 -0400

A brief summary of this episode

023 - Challenged Athletes Foundation

Thu, 07 Sep 2017 12:39:27 -0400

A brief summary of this episode

023 - The Psychology of Disability with Dr. Dan Gotlieb

Wed, 30 Aug 2017 22:43:25 -0400

Dan Gottlieb is a practicing psychologist and therapist with more than 40 years of experience. Best known as the host of "Voices in the Family," a weekly radio program heard for more than 30 years on WHYY-FM, Philadelphia’s NPR affiliate. Dan recently retired from the weekly radio program, and now produces and hosts six specials each year.

Dr. Gotlieb suffered a spinal cord injury at the age of 33 and he joins us to talk about how disability has touched his life and how we can all work to be better human beings.

021 - rideATAXIA Europe, Le Peloton de l'Espoir

Mon, 07 Aug 2017 02:06:39 -0400

rideATAXIA Europe - Le Peloton de l'Espoir was a 450 mile ride from Strasbourg, France to Lyon, France during July 1-8, 2017. There were 20 riders from the US and 30 riders from France. The purpose of the ride was to bring together the French and US FA communities as one united FA community, moving to the finish line together. Join us as Sean "interviews" Kyle about the ride.

020 - LIVE at Horizon Pharma

Sat, 22 Jul 2017 04:56:19 -0400

Join us for a discussion about rare disease patient engagement recorded LIVE at Horizon Pharma.

019 - Dr. David Fajgenbaum - Conquering Castleman Disease

Fri, 14 Jul 2017 14:49:01 -0400

In college, his friends called him The Beast. But then he got mysteriously sick and was on the brink of death 5 different times, stumping specialists. Diagnosed with Castleman Disease, Dr David Fajgenbaum earned his MD and started research on himself. He formed the Castleman Disease Collaborative Network (CDCN) to speed the progress toward a cure for himself and the entire Castleman Disease Community.

018 - Breaking Your Chains w/ Rudy Garcia-Tolson

Mon, 03 Jul 2017 03:19:52 -0400

A brief summary of this episode

017 -Roger Crawford

Fri, 16 Jun 2017 11:57:33 -0400

Sports Illustrated calls Roger Crawford one of the most accomplished physically challenged athletes in the world.

KHTK Interview

Fri, 09 Jun 2017 17:50:23 -0400

Leading up to the 8th Annual Ride Ataxia NorCal (2017), Kyle Bryant was interviewed on KHTK Sports 1140 to promote the bike ride, The Ataxian and spread awareness of Friedreichs Ataxia!

016 - Nutrition with Dr. Liz Applegate

Wed, 31 May 2017 02:25:15 -0400

A brief summary of this episode

Race Across America - Team FARA

Sun, 21 May 2017 22:53:16 -0400

You've heard us talk about our 4-man Team, and 13-member Crew. In this episode, we chat with the other two cyclists from TeamFARA RAAM; John Lockwood and Mike Mellott. John & Mike have both been involved and supportive of many adventures throughout the years and they are always fun to reconnect with. As you'll hear, since competing in RAAM 2010, both of these dudes have married and started families of their own. In this episode you'll enjoy feedback and personal perspectives on why each of these guys joined the team, how they managed to get through some difficult scenarios while on the race, a few favorite memories, and hear about some embarrassing moments you are welcome to make fun of!

RAAM Crew Chief Mike Bryant (Kyle's Dad)

Sun, 07 May 2017 19:06:42 -0400

We never know what we are truly capable of until we find ourselves in a tough situation, when success is the only option.

Kyle's Dad, Mike Bryant joins us to talk about Team FARA in Race Across America and what it took to get the team safely across the country in "The World's Toughest Bike Race."

And Kyle tells a short story about being held hostage by a cat.

013 - Kyle & Sean's #1 Advice

Mon, 24 Apr 2017 01:12:37 -0400

In this episode, Kyle & Sean talk about how building community has helped them and how it could help YOU.

“No man is an island…,” as John Donne reminds us.

Growing up with a rare disease is, almost by definition, lonely. Faced with physical limitations that most of our neighbors don’t have to face many times makes us feel odd. With ataxia, we go through issues with balance that make us seem awkward and clumsy; but all people with disabilities face some kind of uncommon limitation, whether its using our arms or leg, trouble hearing, speaking, or seeing, facing mental issues or any other symptom of a disability. The unfortunate result is that many of us with disabilities feel odd.

However, the truth is that people dealing with disabilities are not alone. It’s important for everyone - disabled or not - to be a part of a community, but it’s even more important for people who feel isolated to find support and understanding from those facing similar challenges as them.

012 - Matt Fritsch - The Spinal Cord Injury (SCI) Community

Mon, 10 Apr 2017 00:36:27 -0400

“To hear from and learn from people who are in the same position...there’s nothing that compares to it.”

A lot of our focus lately has been of Friedreich’s ataxia or FA - the disease that both of us share. And that shouldn’t be a big surprise. FA has had a huge impact on us - it has forced us to see life in a different way and adapt. We have each had friends that have helped shape that impact. One of those friends is Matt Fritsch. Matt has a spinal cord injury and in this episode he joins us for a conversation about how community is essential for all of us no matter what disability we have.

“[Being disabled] is an exclusive club that no one joins on purpose...the parking is a right, not a privilege.”

Matt gives a few tips about navigating life with a disability. One of his most fundamental points is that we cannot do it on our own; that even though doctors, nurses, therapists, and surgeons gave him the same advice, he didn’t pay much attention to what they said, until it was told to him by someone within the spinal-cord injury community.

The need of community for those with disabilities is great. It’s easy to ignore the well-meaning advice and help from others, but when it comes from someone with the same challenges that you are facing - the advice suddenly seems much more important. This applies both within the SCI and FA communities, and among all those facing the challenge of disability.

011 - Ron Bartek Part 2 - Collaboration: We're All In This Together

Mon, 27 Mar 2017 01:53:43 -0400

As promised, here is the second half of our interview with Ron Bartek, president and cofounder of the Friedreich’s Ataxia Research Alliance, or FARA. Please note that the audio quality is less than ideal, but still definitely enjoyable.

Along with Ron’s very impressive resume, we found out that he learned to sleep standing up in Army Ranger School. Ron discovered much of what the body could do when deprived of normal physical needs like sleep and food.

Ron shares about the experience of his son Keith’s diagnosis with Friedreich’s ataxia at nine-years-old. A counselor who noticed Keith’s problems with balance and coordination recommended that Keith go to a neurologist for a check-up. At that appointment few months later, Ron and his wife Raychel were told that Keith had Friedreich’s ataxia (FA), a condition they’d never heard of and couldn’t even spell. When they asked what they could do about this diagnosis, the neurologist gave a grim answer - nothing.

To Ron and Raychel that was not an acceptable answer so they began researching FA on their home computer. They learned about all the symptoms of the disorder, and all of their research was very disheartening. However there was one piece of good news - the year prior (this was in 1997), scientists discovered the specific gene that caused FA. Ron and Raychel believed that since the gene was identified, it would be much easier to find a treatment or a cure, but that there was no organization that specifically researched FA. They decided they would change that.

Ron, Raychel, 5 other parents of children with FA, 1 adult patient, and 3 scientists submitted paperwork to the District of Columbia to initiate FARA and become its first board of directors.

One of FARA’s first actions was the submittal of a proposal to the NIH for the first scientific conference on Friedreich’s ataxia. Four months later, the grant was funded by the NIH, and six months later, that conference was held for people allover the world to attend.

Important to note is at that first conference, no drug company wanted to attend (because it’s too rare, they said) and no clinical trials for FA was ever done. Today, multiple drug companies are aligned with FARA. And they are hopeful for a cure.

The source of FARA’s success can be summed up in one word: collaboration. Knowing that FA exists as a rare genetic anomaly is a boring statistic, but meeting FA patients, seeing their strengths and weaknesses, getting to know them - helps to bring out the humanity of those who live with FA.That humanity is central to what FARA is, and who Ron is. Whether he is partnering with a group of scientists and drug companies or following the two stripes on the soldier’s hat in front of him, Ron Bartek recognizes that our strength is found in our ability to collaborate with others.

010 - Adaptive Equipment Grants - The Ataxian Athlete Initiative

Sun, 12 Mar 2017 21:05:25 -0400

The idea for the Ataxian Athlete Initiative (AAI) adaptive cycling equipment grant program came when Kyle received a grant from the Challenged Athletes Foundation, which he used to purchase a Catrike recumbent trike. That purchase changed his life: while on it, he didn’t feel as physically limited as he felt most times. Realizing how impactful that grant was for him, he created a grant specifically for people with FA, to purchase adaptive cycling equipment, which is often times cost prohibitive for someone with a disability.

Since 2009, the Ataxian Athlete Initiative has provided 32 individuals with adaptive cycling equipment. The application for 2017 is available now until May 1; any person with ataxia can apply by clicking “Apply for an AAI Grant” at curefa.org/aai, giving information on the applicant and what kind of equipment would work for them. Please remember that this is a competitive application process and funds are limited.

Some tips to consider when applying to the AAI:

Try out various adaptive equipment. Sit in different equipment. Take a spin. Determine what is most fitting and most comfortable for you.
Be honest. Tell us how you, individually, would benefit from receiving funds from the AAI, and what impact it would have on your life.
Be unique. Make your application far above general - make it personal. Speak from the heart. And remember to focus on what you can and will do.

And don’t forget that even those who don’t receive full or partial funding from the AAI will receive tips on how to make their application stand out more for other equipment grant programs or for the AAI again in the future.

Some of the links we talked about in this episode:

Ataxian Athlete Initiative: http://curefa.org/aai
Kyle’s blog post on getting started with your search for adaptive cycling equipment: http://www.curefa.org/rideataxia-blog/a-guide-to-beginning-search-for
Challenged Athletes Foundation grant program, Access For Athletes: http://www.challengedathletes.org/programs/grants/

009 - Ron Bartek, Co-Founder and President, FARA

Sun, 26 Feb 2017 18:30:47 -0400

We are honored to interview Ron Bartek, president and co-founder of the Friedreich’s Ataxia Research Alliance, or FARA. Since both of us have FA, this organization and Ron himself are special to us.

In a word, Ron is a peacemaker. Kyle starts off by reading Ron’s long and impressive bio.. Of special note to Ron is that he was able to be a part of the negotiation team for the Intermediate-Range Nuclear Forces (INF) Treaty between The United States and The Soviet Union. As a school kid, Ron dreamed of being able to know enough about global superpowers that he would be able to help orchestrate peace between the US and the Soviet Union. After an impressive military career, he was a part of the INF Treaty, which helped put an end to the Cold War.

Shortly after that treaty was signed, Ron’s son was diagnosed with the rare disorder Friedreich’s ataxia (FA). Suddenly the world of the rare disease community opened up to him, and he decided to use his ample peacemaking skills in the fight against FA.

008 - Paul Melmeyer of the National Organization for Rare Disorders

Wed, 22 Feb 2017 13:00:00 -0400

Interview with NORD

007 - Max Bronstein

Mon, 20 Feb 2017 00:32:51 -0400

For our second interview before Rare Disease Day (Feb 28), we chat with Max Bronstein, Chief Advocacy and Science Policy Officer at The Everylife Foundation for Rare Diseases. The goal of the Foundation is to help advance innovation in the rare disease community; to advance knowledge and methods of support for those with a rare disease, and to ultimately look towards developing and enabling access to treatments or cures.

Max is a scientist at heart; he has been published in Nature and The New England Journal of Medicine which makes him a great ally in raising awareness of rare diseases. He uses his background in his job at The Everylife Foundation in two big ways.

One way that he uses his science background is what he calls regulatory issues. He does this by continuously holding meetings with large health and biotech and pharma partners. He speaks directly to the doctors and scientists at the forefront of cutting edge research in health and medicine and reminds them of the reality of rare diseases, a field often overlooked or forgotten.

Another way that Max is a voice for those in the rare disease community is by working in social policy issues. This is when Max sets up meetings with politicians so that the rare disease community is represented. This involves dialoguing with senators and representatives on Capitol Hill whenever drug costs, talks of healthcare, or any other issue related to the rare disease community arises, and also just to meet with them regularly to remind them of the reality of rare diseases. He regularly goes to both the White House and Congress.

Max explains these to us and walks us through a big success that The Everylife Foundation and other organizations helped push through instituted: the 21st Century Cures Act.

Keep in touch with The Everylife Foundation to keep up with all of their diverse efforts and find out how you can get involved! Visit their website at http://everylifefoundation.org/, follow them on Facebook: https://www.facebook.com/EveryLife4RareDiseases/, and Twitter: @EveryLifeOrg.

006 - Nicole Boice

Wed, 15 Feb 2017 17:00:00 -0400

Nicole Boice

005 - Focus on Rare Disease Day with Special Guests: Nicole Boice, Max Bronstein, and Paul Melmeyer

Mon, 13 Feb 2017 00:00:00 -0400

In the rare disease community, strength is in unity and supporting one another.

February 28th is globally recognized as Rare Disease Day. Since Friedreich’s ataxia, the disease shared by us Dudes, is considered a rare disease, five episodes will come out in February, instead of one episode every other week, as normal. We explain what is meant by “rare diseases” and how rare they really are. This episode contains snippets of three interviews that will be released in their entirety later in the month. Nicole Boice, the CEO of Global Genes, speaks about the importance of knowledge in the rare disease community; only by knowing all we can about whatever disorder we may face can we successfully move forward. In the second snippet, Max Bronstein of the Everylife Foundation for Rare Diseases reminds us of the importance of policy issues when seeking treatments for rare diseases. Finally Paul Melmeyer from the National Organization of Rare Disorders (NORD) emphasizes the benefits of recognizing Rare Disease Day, and what that has done for the rare disease community overall. On February 27, the day before Rare Disease Day, our interview with Ron Bartek, the president and cofounder of the Friedreich’s Ataxia Research Alliance, will be released. The Two Disabled Dudes invite you to help us spread awareness this month.

004 – Travel Gone Wild – How to conquer apprehension during travel with a disability.

Mon, 30 Jan 2017 02:07:03 -0400

There is a lot of apprehension that comes along with travel, especially when also factoring a disability into the situation. There a few important things that help us battle that apprehension including a strong game plan informed by the experiences of others, and the emotional flexibility to roll with challenges and continue to move forward. In this episode, Kyle and Sean share insights from listener feedback and personal stories of their travels.

003 - Travel and Mobility

Mon, 16 Jan 2017 00:58:24 -0400

Travel is freedom. On the surface disability seems to limit that freedom. But it’s not limited, just different. But you need the right mindset to overcome obstacles. Join us as we share a conversation about what informs our approach to travel.

002 - Self Image

Sun, 01 Jan 2017 20:58:27 -0400

What is self image and why is it important? Join us as we discuss self image and things we can think about to help promote a healthy one.

001 - Life Is About How We React

Sun, 18 Dec 2016 17:39:11 -0400

Life happens and many things are out of our control. What is in our control is how we react to those situations. Our reactions often define the outcome of a situation - good, bad, and anywhere in between. In this episode we talk about our reactions to challenging circumstances. We also give a few examples of people that have had a positive and productive reaction to challenging circumstances.

000 - Welcome to the Two Disabled Dudes Podcast

Wed, 07 Dec 2016 02:06:09 -0400

Welcome to the show! In this episode Kyle and Sean talk about creating the podcast and their connection through the diagnosis of Friedreich's ataxia (FA). The focus is on the empowerment they get by connecting to the FA community, the Rare Disease Community, and anyone with similar experiences.