Two Disabled Dudes Podcast

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 ResourcesUnreasonable Hospitality

In Episode 276, Kyle kicks things off with a brunch story involving an oversized, impossible-to-handle coffee mug and a series of well-intentioned but clumsy attempts to make it right.The episode then shifts gears with a fun and thought-provoking compilation of answers from past guests to the question: If you ruled the world, what would you change? Responses range from practical ideas like increasing accessibility and reducing barriers, to grand visions of kindness, open science, and even perfect weather in Pennsylvania. Each guest's answer serves as a reminder of how personal experiences shape our view of what the world could be.The episode wraps up with heartfelt thank-you notes: Kyle expresses his gratitude to all his generous donors by adding each of their names to his fundraising “spirit chain,” while Sean thanks Santino, a colleague who went out of his way to share how much he enjoyed Sean's recent corporate presentation. These moments of appreciation highlight the power of connection and acknowledgment in both personal and community-driven efforts.This episode is a reminder that even small gestures can have a world-changing impact.Links and ResourcesKatie, Team TelomereHeidi, Association for Creatine Deficiencies (ACD)Jay, Write on, Fight onRivki, CTNNB1 Connect & CureKendall, IconErin, Rea of Hope

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

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

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

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

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

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

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 & ResourcesMatt's Childrens BookMatt's NYT ArticleMatt's ColumnWhat Do You Do With An Idea?

Ever feel like your energy levels are on a shoestring budget? In this episode, Sean and Kyle tackle the daily balancing act of managing energy, especially with a rare disease. From the science of sleep hygiene (which, by the way, Kyle has mastered like a bedtime ninja) to the mystery of why spoon theory uses, well, spoons as its currency, they dive into the mental and physical toll of fatigue. They share personal stories of how they've learned to prioritize commitments, manage FOMO, and avoid turning into a "pile of poop" at social events. Plus, Kyle admits that yes, a $400 night guard does indeed feel like a tiny hug for his teeth.But it's not all sleepytime talk—this episode is packed with real-life strategies for handling exhaustion without guilt. They break down how they navigate full-time jobs, social lives, and the ever-present need to rest, all while avoiding the misconception that fatigue equals laziness. The dudes also dish out some wisdom for non-disabled folks on how to be more mindful of invisible energy limitations (hint: holding the elevator for two extra seconds won't kill you). Whether you're managing a rare disease or just trying to figure out why you can't stay awake past 9 PM, this episode is a must-listen. And as always, they wrap up with a dose of gratitude—this time for third graders with surprisingly deep questions and flight attendants who appreciate a good old-fashioned thank-you note.Also in This Episode:Kyle introduces the term “Sleep Hygeine”Links and ResourcesSpoon Theorynd

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 StudiosLinks And Resources:Jay's Website where you can find all his books: Write on Fight on

This episode features an interview with Heidi Wallis, Executive Director of the Association for Creatine Deficiencies (ACD). Heidi discusses ACD's efforts in advancing research, treatments, and newborn screening for creatine deficiency disorders. Heidi shares her personal journey as a mother of two children with creatine deficiencies, emphasizing the importance of early diagnosis and treatment. The conversation also explores the challenges and progress in securing newborn screening for these disorders, underscoring ACD's mission to improve lives and ultimately find a cure.Also in this episode: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:Association for Creatine Deficiencies (ACD)Chan Zuckerburg Initiative (CZI) Rare As OneUplifting Athletes

In this episode, we dive into a topic that hits close to home: the tension between hoping for a cure and fully embracing life as it is today. We explore how dreaming about a different future—whether through medical breakthroughs, financial success, or other changes—can be both motivating and, at times, limiting.Kyle shares a frustrating parking lot experience that sparks a conversation about accessibility, awareness, and the small but constant challenges we face in daily life with a disability. From there, we reflect on how our perspectives have evolved over the years, the importance of finding joy in the present, and how we each work to strike a balance between planning for the future and making the most of today.Plus, in the spirit of gratitude, we take a moment to recognize some incredible people in our lives who make a difference.Join us for an honest, thought-provoking, and relatable discussion about perspective, priorities, and the power of focusing on what truly matters.Also In This Episode:Parking Like a BossThank you notes: Leona Strait and Aunt Libby

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 experience43 year old small talkThank you notes: Rocky the Rare At Sea travel agent, and a kind Trader Joe's employee

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 EpisodeThe Dudes' factors that affect sleep qualitySean files a complaint about a local businessThank you notes: Katie Lloyd, Ken Miller

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. KyleHiring a personal care attendant for assistance with daily tasks Staying engaged with rideATAXIA fundraising effortsFinding an enjoyable and sustainable exercise routine SeanReducing unnecessary spendingLimiting Risk timePrioritizing quality sleep for overall well-beingAlso in this episode:Kyle's freezing feetSean's progress climbing stairsThank you notes: The FARA Energy Ball Planning Committee, and Friends Bill & Dee

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 ResourcesRare at Sea

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.

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 SymposiumKyle's new van!Thank you to Mark and Chavez

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.

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.

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.  

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

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

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

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

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

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: Jett Foundation Camp Promise

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: rideATAXIA Hometown San Luis Obispo, CA. May 11, 2024 Nic Novicki's 2DD Episode Colin's previous episode: 035 - Drug Development - LIVE at REATA Pharmaceuticals Team FARA Himalayas Fundraising page Alex Roca finishing Barcelona Marathon Newsworthy music courtesy of Zapsplat.com

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  

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: Download the Overjoyed accessible gaming software Newsworthy music courtesy of Zapsplat.com

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

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: Watch 'Go On, Be Brave' documentary The clip Sean mentioned: Making a hard decision? WATCH THIS | Dr. Ellen Langer Newsworthy music courtesy of Zapsplat.com

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: Sean's column: The progressive nature of FA taught me to appreciate gradual change

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. 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: EveryCure EveryCure Announces Arpa-H Funding at the White House! Castleman Disease Collaborative Network (CDCN) Chasing My Cure 2DD Ep. 019 - Dr. David Fajgenbaum, Conquering Castleman Disease 2DD Ep. 091 - Chasing our Cure with Dr. David Fajgenbaum 2DD Ep. 092 - Why Humor is Important with Dr. David Fajgenbaum    

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: Light Up For Rare  

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: Any One of Us documentary trailer Paul Basagotia Instagram

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  

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: Benedict Cumberbatch: "Do" Aaron Wheelz Instagram Newsworthy music courtesy of Zapsplat.com

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

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: Once Upon a Gene The Disorder Channel Global Genes

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 Caley's Facebook Caley's YouTube Caley's Twitter/X Caley's Instagram     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 ©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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. 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 ©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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  

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. 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 ©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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. 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 ©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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. 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 ©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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. 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 ©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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: Sean's Travel Story in USA Today Stella Young's TED Talk   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 ©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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. 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 ©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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. 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 ©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.