Two Disabled Dudes Podcast

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 yourse

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 demand

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 th

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 FaberThank you notes: The Kindness of strangers and Team FARA supportersLinks and resources:More about Sean and Kyle's trip.The route

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 interv

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 SpeakerThank you notes: John the mailman and the Masterclass appLinks and resources:Rob's previous episode: 070Episode with Rob's Rare Resilience segmentJose Flores social media: Instagram | Facebook | LinkedInVisit 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 & JRare Resilience: Nathan Peck, CEO of Cure VCP DiseaseLinks and resources:Route map for the Dude's ride in IndiaRob's previous full episodeEpisode with Rob's Rare Resilience segmentVisit 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 centsRare Resilience: Rob Long, Executive Director of Uplifting AthletesThank you notes: Starbucks baristas & Pat O'ConnelLinks and resources:Canine Partners for LifeVisit 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 DuchenneKris Napper - Graphic Designer/Illustrator, Business Owner, living with SMAChris Schlechty - Software Engineer, Jett Foundation Board of Directors, living with Limb-girdleColin Werth - IT Specialist, International Traveler, living with DuchenneAmanda Becker - Mom to individual living with DuchenneThe 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 FoundationCamp 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 ArenaNewsworthy: Athlete With Cerebral Palsy Finishes The Barcelona MarathonThank 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 EpisodeColin's previous episode: 035 - Drug Development - LIVE at REAT

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 FANewsworthy 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 episodeNewsworthy - 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 massagerLinks and resources:Download the Overjoyed accessible gaming softwareNewsworthy 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 awaren

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 travelNewsworthy - 'Go On, Be Brave' documentary captures perseverance in face of ALSThank you notes: Kyle's driving instructor and Sean's friend in MiamiLinks and resources:Watch 'Go On, Be Brave' documentaryThe clip Sean mentioned: Making a hard decision? WATCH THIS | Dr. Ellen LangerNewsworthy 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 confusionNewsworthy: FOX 5 Las Vegas Surprise SquadThank you notes: A vacation buddy and fake plantsLinks and resources:Sean's column: The progressive nature of FA taught me to appreciate gradual changeNewsworthy music courtesy of Zapsplat.com

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 YOUTUBEAlso in this episode:Sean abandons his principlesNewsworthy: 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 GuyLinks and Resources:EveryCureEveryCure Announces Arpa-H Funding at the Whit

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 RareNewsworthy music courtesy of Zapsplat.com 

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 EverThank you notes: Sean - A curious coworker. Kyle - Mike and Diane Bryant (Dad and Mom)Links and Resources:Any One of Us documentary trailerPaul Basagotia InstagramNewsworthy music courtesy of Zapsplat.com

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 partyLinks and Resources:Newsworthy music courtesy of Zapsplat.com