Two Disabled Dudes - Living with Urgency
About
Available on
Community
439 episodes
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: __ __ Links and resources: __ __
In this episode, we discuss the groundbreaking work of Roll Mobility https://rollmobility.com, 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: __ __ Links and resources: __ __
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: __ __ Links and resources: __ __
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: __ __ 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. VIEW THIS INTERVIEW ON YOUTUBE Also in this episode: __ __ Links and Resources: __ __
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: __ __ Links and Resources: __ __
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: __ __ Links and Resources: __ __
Adapting to changes is a big part of life for everyone. Listen as The Dudes discuss their approach to adapting. In this episode: __ __ __
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: __ __
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 __ __
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: __ __
Sean and Kyle engage in a heartfelt conversation with Caley Caroll, a mother, caregiver, and fierce advocate for her son Whitten John and his health challenges. Whitten John was diagnosed with Diabetes Insipidus and Langerhans Cell Histiocytosis, two rare diseases. Caley shares the emotional journey of receiving the diagnoses, the difficulties of caregiving, and the impact on her family. She recounts the challenges of treatments, including chemotherapy, and the importance of gratitude throughout the process. The conversation touches on the effects on her other children and the transformation of relationships within the family. Caley emphasizes the need for intuition and advocacy in navigating the complexities of healthcare. Despite the hardships, there's a sense of gratitude and celebration in the present. LINKS & RESOURCES __ __ * This episode brought to you in part by Reata Pharmaceuticals. * Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com ©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 __ __ * 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: __ __ 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 __ __
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 __ __ * 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 __ __ * 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 __ __ * 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 __ __ * 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: __ __ Links and Resources: __ __ * This episode brought to you in part by Reata Pharmaceuticals. * Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com ©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: __ __ * 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: __ __ * 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.
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 live in excellence. * * * * * Links and Resources: __ __ * This episode brought to you in part by Reata Pharmaceuticals. * Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com ©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
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: __ __ We 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 https://rideataxia.org/philly
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: __ __
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: __ __
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: __ __ Links and Resources: __ __ * This episode brought to you in part by Reata Pharmaceuticals. * Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com ©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
Physical Therapy is an important part of care for many people in the rare disease and disability communities, However, it's difficult to find a phhysical therapist who will work to understand your disease. That's why we enjoyed talking with Dr Gretchen Hawley. See how she's different and how you might be able to put some of her principles into practice. In this Episode: __ __ Links and Resources: __ __ __ * This episode brought to you in part by Reata Pharmaceuticals. Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com ©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
There are lots of things that may be accessible for one person but not another. Some are inconvenient, and some are impossible. From topics in other episodes to recently traveling together, we noticed a handful of things that make sense, and things that don’t make sense. Listen for experiences, both good and ridiculous, as we discuss the challenges of accessibility. In this Episode: __ __ Links and Resources: __ __ * This episode brought to you in part by Reata Pharmaceuticals. Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com ©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.
