Latest Ataxia Podcast Episodes
255 - Season Finale - We’re Riding the World’s Highest Road
Two Disabled Dudes - Living with Urgency - May 27, 2024 07:01 - 44 minutes ★★★★★ - 107 ratingsIn 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 a...
254 - From Dad to Advocate to CEO: John Crowley's Continued Commitment
Two Disabled Dudes - Living with Urgency - May 20, 2024 07:01 - 50 minutes ★★★★★ - 107 ratingsThis 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 ...
253 - Uplifting Athletes: Harnessing the Power of Sport for Rare Diseases
Two Disabled Dudes - Living with Urgency - May 13, 2024 07:01 - 34 minutes ★★★★★ - 107 ratingsRob 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 ...
252 - NFL Plans Crushed, His Response Changes Lives
Two Disabled Dudes - Living with Urgency - May 06, 2024 07:01 - 47 minutes ★★★★★ - 107 ratingsIn 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 br...
251 - From Canes to Canines: Linda's Path to Mobility
Two Disabled Dudes - Living with Urgency - April 29, 2024 07:01 - 54 minutes ★★★★★ - 107 ratingsIn 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...
250 - Thriving with Duchenne - Rare Disease Day with Jett Foundation
Two Disabled Dudes - Living with Urgency - April 22, 2024 07:01 - 1 hour ★★★★★ - 107 ratingsOur 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/Illust...
249 - 20 Years in the Making: REATA's Story of Skyclarys
Two Disabled Dudes - Living with Urgency - April 15, 2024 07:01 - 51 minutes ★★★★★ - 107 ratingsThis 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 acquisitio...
248 - Everyone Holds a Piece w/ FARA CEO, Jen Farmer
Two Disabled Dudes - Living with Urgency - April 08, 2024 07:01 - 43 minutes ★★★★★ - 107 ratingsIn 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, e...
247 - Tenacity and the Power of Persistence
Two Disabled Dudes - Living with Urgency - April 01, 2024 07:01 - 34 minutes ★★★★★ - 107 ratingsIn 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 reflec...
246 - Empowering Accessibility, One Review at a Time
Two Disabled Dudes - Living with Urgency - March 25, 2024 07:01 - 42 minutes ★★★★★ - 107 ratingsIn 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 locat...
245 - Settle or Soar? Embracing Uncertainty
Two Disabled Dudes - Living with Urgency - March 18, 2024 07:01 - 35 minutes ★★★★★ - 107 ratingsThe 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'...
244 - Change & Consistency with Progressive Disease
Two Disabled Dudes - Living with Urgency - March 11, 2024 08:01 - 21 minutes ★★★★★ - 107 ratingsIn 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...
243 - EveryCure and the Power of Collaboration w/ Dr. David Fajgenbaum
Two Disabled Dudes - Living with Urgency - March 04, 2024 08:01 - 50 minutes ★★★★★ - 107 ratingsIn 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 hi...
242 - Dave Lynch: 27 Years, 700+ Patients, and the First Treatment
Two Disabled Dudes - Living with Urgency - February 26, 2024 08:01 - 43 minutes ★★★★★ - 107 ratingsDave (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 c...
241 - Feeling Helpless? Here Are 4 Ways To Help
Two Disabled Dudes - Living with Urgency - February 19, 2024 08:01 - 29 minutes ★★★★★ - 107 ratingsFor 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 disc...
240 - Adapting to Life's Curveballs
Two Disabled Dudes - Living with Urgency - February 12, 2024 08:01 - 25 minutes ★★★★★ - 107 ratingsAdapting 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...
239 - Season Premier - Are You a Doer or a Talker?
Two Disabled Dudes - Living with Urgency - February 05, 2024 08:01 - 35 minutes ★★★★★ - 107 ratingsListener 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...
238 - Season Finale - The Dynamics of Friendship
Two Disabled Dudes - Living with Urgency - November 27, 2023 08:01 - 33 minutes ★★★★★ - 107 ratingsIn 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 inf...
237 - The Vital Role of Caregivers in Rare Disease Advocacy
Two Disabled Dudes - Living with Urgency - November 20, 2023 08:01 - 1 hour ★★★★★ - 107 ratingsWe 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...
236 - A Mom's Perspective on Devastation and Gratitude
Two Disabled Dudes - Living with Urgency - November 13, 2023 08:01 - 42 minutes ★★★★★ - 107 ratingsSean 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 jou...
235 - Addressing the Epidemic of Wheelchair Damage by Airlines
Two Disabled Dudes - Living with Urgency - November 06, 2023 07:01 - 43 minutes ★★★★★ - 107 ratingsZach 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 i...
234 - World Duchenne Awareness Day - Jett Foundation
Two Disabled Dudes - Living with Urgency - November 01, 2023 07:01 - 1 hour ★★★★★ - 107 ratingsThe 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 Misconcept...
233 - Should Disability Heighten Our Sense of Responsibility?
Two Disabled Dudes - Living with Urgency - October 30, 2023 07:01 - 24 minutes ★★★★★ - 107 ratingsIn 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-board...
232 - Can Rare Disease Create Heroes?
Two Disabled Dudes - Living with Urgency - October 23, 2023 07:01 - 39 minutes ★★★★★ - 107 ratingsEpisode 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 eve...
231 - Speak Up, Stand Out: Silence is Not Advocacy
Two Disabled Dudes - Living with Urgency - October 16, 2023 07:01 - 31 minutes ★★★★★ - 107 ratingsIn 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...
230 - Navigating Mental Illness: Parent Stories
Two Disabled Dudes - Living with Urgency - October 09, 2023 07:01 - 49 minutes ★★★★★ - 107 ratingsIn 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 ...
229 - Exercise and Motivation: Challenges of Disability
Two Disabled Dudes - Living with Urgency - October 02, 2023 07:01 - 36 minutes ★★★★★ - 107 ratingsKeeping 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 South...
228 - Podcasting Insights and Reflections
Two Disabled Dudes - Living with Urgency - September 25, 2023 07:01 - 22 minutes ★★★★★ - 107 ratingsAdvancement 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 R...
227 - Pushing Boundaries: A Blind Athlete's Story
Two Disabled Dudes - Living with Urgency - September 18, 2023 07:01 - 36 minutes ★★★★★ - 107 ratingsDespite 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 athle...
226 - Navigating Disability & Long-term Relationships
Two Disabled Dudes - Living with Urgency - September 11, 2023 07:01 - 30 minutes ★★★★★ - 107 ratingsJoin 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 o...
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