Two Disabled Dudes Podcast

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 InstagramNewsworthy 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 ResourcesMindpath Health - 80 fun questions to ask your friends to get t

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

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 & ResourcesCaley's FacebookCaley's YouTubeCaley's Twitter/XCaley's Instagram This episode brought to you in part by Reata Pharmaceuticals.Reata Pharmaceuticals is the company that makes SKYCLA

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 trav

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 CarriersCommon Misconceptions About Female CarriersChallenges of Transitioning from Pediatric to Adult CareGeographic Challenges and Access to CareThe Role of Virtual VisitsTips for Navigating Healthcare ChallengesWe 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 & ResourcesFind 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 & ResourcesSean's Article: Living With A Disability Heightens My Sense Of ResponsibilityRegister Today: Friedreich's ataxia News Virtual Event, Nov 1Check it out: Aquila FitnessThis 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

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 & ResourcesRegister Today: Friedreich's ataxia News Virtual Event, Nov 1Read: Matt's ColumnWatch: FAR

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 & ResourcesRegister Today: Friedreich's ataxia News Virtual Event, Nov 1Watch: 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 res

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 websiteThis 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 tha

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 LincolnLinks and Resources: Sean's Travel Story in USA TodayStella Young's TED TalkThis 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 MovementThis 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 TurtleThis 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, RE

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.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.

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

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 ChannelMichelle Rivas, Senior Manager, Communications, Horizon TherapeuticsEve Dryer, Vice president, Patient Advocacy, Travere TherapeuticsWe learned a lot from these fellow advocates and we hope you do too!

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

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 

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

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?