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PODCAST

Two Disabled Dudes

The 2DD podcast is about setting sights beyond the challenges in your life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster, and practical thoughts that you can apply to your life with this podcast. Hosts Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities. However both dudes have completed several long distance bike

education self-improvement

All Episodes

38:21

263 - The Surprising Truth About Independence

Two Disabled Dudes ·

2025/02/17

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

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33:46

262 - Do Our Resolutions Reveal Our Age?

Two Disabled Dudes ·

2025/02/10

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 tasksStaying engaged with rideATAXIA fundraising effortsFinding an enjoyable and sustainable exercise routineSeanReducing unnecessary spendingLimiting Risk timePrioritizing quality sleep for overall well-beingAlso

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38:39

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

Two Disabled Dudes ·

2025/02/03

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

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40:07

260 - Our Perceptions of Disability Were Wrong

Two Disabled Dudes ·

2024/12/09

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

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39:50

259 - If Sean & Kyle Won The Election

Two Disabled Dudes ·

2024/11/11

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

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36:13

258 - Navigating Setbacks: 4 Tips for Gaining Momentum

Two Disabled Dudes ·

2024/10/14

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,

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51:43

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

Two Disabled Dudes ·

2024/08/05

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

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44:57

255 - Season Finale - We’re Riding the World’s...

Two Disabled Dudes ·

2024/05/27

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

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50:02

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

Two Disabled Dudes ·

2024/05/20

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

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34:06

253 - Uplifting Athletes: Harnessing the Power of...

Two Disabled Dudes ·

2024/05/13

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

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47:02

252 - NFL Plans Crushed, His Response Changes Lives

Two Disabled Dudes ·

2024/05/06

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

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54:08

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

Two Disabled Dudes ·

2024/04/29

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

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01:01:15

250 - Thriving with Duchenne - Rare Disease Day with...

Two Disabled Dudes ·

2024/04/22

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

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51:14

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

Two Disabled Dudes ·

2024/04/15

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

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43:42

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

Two Disabled Dudes ·

2024/04/08

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

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34:58

247 - Tenacity and the Power of Persistence

Two Disabled Dudes ·

2024/04/01

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

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42:50

246 - Empowering Accessibility, One Review at a Time

Two Disabled Dudes ·

2024/03/25

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

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35:39

245 - Settle or Soar? Embracing Uncertainty

Two Disabled Dudes ·

2024/03/18

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

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21:22

244 - Change & Consistency with Progressive Disease

Two Disabled Dudes ·

2024/03/11

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

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50:36

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

Two Disabled Dudes ·

2024/03/04

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,

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