Two Disabled Dudes - Living with Urgency
443 episodes - English - Latest episode: 16 days ago - ★★★★★ - 107 ratingsThe 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 rides including “The World’s Toughest Bike Race” - Race Across America (RAAM). Their RAAM journey is the subject of an award winning documentary called The Ataxian. Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch.
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Episodes
248 - Everyone Holds a Piece w/ FARA CEO, Jen Farmer
April 08, 2024 07:01 - 43 minutes - 60 MBIn 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 syndro...
247 - Tenacity and the Power of Persistence
April 01, 2024 07:01 - 34 minutes - 48 MBIn 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...
246 - Empowering Accessibility, One Review at a Time
March 25, 2024 07:01 - 42 minutes - 34.4 MBIn 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 Ro...
245 - Settle or Soar? Embracing Uncertainty
March 18, 2024 07:01 - 35 minutes - 28.6 MBThe 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 frien...
244 - Change & Consistency with Progressive Disease
March 11, 2024 08:01 - 21 minutes - 18.6 MBIn 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'...
243 - EveryCure and the Power of Collaboration w/ Dr. David Fajgenbaum
March 04, 2024 08:01 - 50 minutes - 40.6 MBIn 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 drug...
242 - Dave Lynch: 27 Years, 700+ Patients, and the First Treatment
February 26, 2024 08:01 - 43 minutes - 60.3 MBDave (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: Ligh...
241 - Feeling Helpless? Here Are 4 Ways To Help
February 19, 2024 08:01 - 29 minutes - 40.7 MBFor 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...
240 - Adapting to Life's Curveballs
February 12, 2024 08:01 - 25 minutes - 34.9 MBAdapting 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...
239 - Season Premier - Are You a Doer or a Talker?
February 05, 2024 08:01 - 35 minutes - 48.9 MBListener 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...
238 - Season Finale - The Dynamics of Friendship
November 27, 2023 08:01 - 33 minutes - 26.7 MBIn 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...
237 - The Vital Role of Caregivers in Rare Disease Advocacy
November 20, 2023 08:01 - 1 hour - 50.5 MBWe 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...
236 - A Mom's Perspective on Devastation and Gratitude
November 13, 2023 08:01 - 42 minutes - 34.3 MBSean 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 throug...
235 - Addressing the Epidemic of Wheelchair Damage by Airlines
November 06, 2023 07:01 - 43 minutes - 34.4 MBZach 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 sig...
234 - World Duchenne Awareness Day - Jett Foundation
November 01, 2023 07:01 - 1 hour - 64.1 MBThe 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 Misconceptions About Female Carriers Challenges of Transitioning from Pediatric to Adult Care Geographic Challenges and Access to Care The Role of Virtual Visits Tips for Navigating Healthcare Challenges W...
233 - Should Disability Heighten Our Sense of Responsibility?
October 30, 2023 07:01 - 24 minutes - 20 MBIn 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 Sean's Article: Living With A Disability ...
232 - Can Rare Disease Create Heroes?
October 23, 2023 07:01 - 39 minutes - 31.4 MBEpisode 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 ...
231 - Speak Up, Stand Out: Silence is Not Advocacy
October 16, 2023 07:01 - 31 minutes - 26.1 MBIn 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 expre...
230 - Navigating Mental Illness: Parent Stories
October 09, 2023 07:01 - 49 minutes - 39.5 MBIn 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 highl...
229 - Exercise and Motivation: Challenges of Disability
October 02, 2023 07:01 - 36 minutes - 29.6 MBKeeping 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 Lincoln Links and Resources: S...
228 - Podcasting Insights and Reflections
September 25, 2023 07:01 - 22 minutes - 18.3 MBAdvancement 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 Movement 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...
227 - Pushing Boundaries: A Blind Athlete's Story
September 18, 2023 07:01 - 36 minutes - 29 MBDespite 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 ...
226 - Navigating Disability & Long-term Relationships
September 11, 2023 07:01 - 30 minutes - 24.6 MBJoin 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 epi...
225 - From Preterm to Pediatrician: Tyler's Triumph with CP
September 04, 2023 07:01 - 49 minutes - 39.9 MBDr. 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, ...
224 - The Power of the Patient Voice - BIO International
August 28, 2023 07:01 - 44 minutes - 36.1 MBTo 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 Channel Michelle Rivas, Senior Manager, Communications, Horizon Therapeutics Eve Dryer, Vice president, Patient Advocacy, ...
223 - Attitudes Can Change - Let's Talk Debra
August 21, 2023 07:01 - 43 minutes - 34.6 MBA 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
222 - Is Technology Good or Bad? Yes.
August 14, 2023 07:01 - 32 minutes - 26.1 MBEver 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 ha...
221 -Disability & Fun Can Coexist
August 07, 2023 07:01 - 30 minutes - 24.1 MBSeason 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 ...
220 - Season Finale - How Much is Too Much?
May 29, 2023 07:01 - 46 minutes - 106 MBFor 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 thi...
219 - Physical Therapy Goals with Dr. Gretchen Hawley
May 22, 2023 07:01 - 55 minutes - 45 MBPhysical 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: Kyle talks about Team FARA's participation in Bike New York's Five Boro Bike Tour along with 30,000 other people. Y...
218 - Accessibility: Inconvenient or Impossible?
May 15, 2023 07:01 - 51 minutes - 41.4 MBThere 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: Sean tells us the latest in his dealingsx with StorQuest. Spoiler: It's not good. You Got This, Men...
217 - Are Disabled Students Forgotten On University Campuses?
May 08, 2023 07:01 - 57 minutes - 78.3 MBFor college students, sports games are a huge part of the college experience. However, students with disabilities are often left out due to poor accessibility. In episode 217 you'll hear from Noah Griffith, a journalism major who wrote a letter about his experience accessing the student section at a basketball game. Noah used his voice to make a difference. In this Episode: The Dudes discuss how planning and execution are two different things when it comes to Airlines. You Got This, M...
216 - The Emotional Response To Research
May 01, 2023 07:01 - 37 minutes - 51.8 MBResearch studies are designed to investigate the details of our bodies and lives. The research process has the potential to point out how our disability limits us. This can be tough to take. That’s why it’s important to recognize the emotional response to research. In this Episode: Kyle left the house to get pants. You Got This, Mental Health featuring Heidi Behr - You might remember our friend Heidi from Episode 182 - Comparing Ted Lasso To Reality. Heidi returns to talk about JO...
215 - Birthday Parties Can Be Tough with Guest Host: Effie Parks
April 24, 2023 07:01 - 47 minutes - 38.4 MBThis is the first episode ever that does not feature both Dudes! Sean is joined by our friend and guest host, Effie Parks from the Once Upon A Gene Podcast. Effie produces short “Effisodes” on her show and one in particular grabbed Sean’s attention. With Kyle on the road, Effie agreed to help The Dudes with this episode and takes Kyle's place, in addition to allowing us to share one of her Effisodes. In this Episode: How Effie got into podcasting. You Got This, Mental Health featuring...
214 - Inspiration Porn - Are We Part of the Problem?
April 17, 2023 07:01 - 43 minutes - 60 MBAccording to an article Kyle read on Forbes.com, "Inspiration Porn provides kind of superficial pleasure and gratification for the viewer, while objectifying , often harming the mostly passive subjects being looked at.” Sounds pretty bad. Find out what the Dudes think. In this Episode: Kyle gets Door Dash delivered to the wrong address...again. You Got This, Mental Health featuring Kate Walker - Many of us ask ourselves "why me?" when thinking about our rare disease. Kate helps us ex...
213 - Why is Government so HARD?
April 10, 2023 07:01 - 59 minutes - 48.8 MBAs Sean says: Government is HARD - especially when trying to navigate the Social Security Disability system. That’s why we talk to Spencer Bishins who worked in the Social Security Administration for years and shares his insights with us. Spencer just scratches the surface with us- but you can find all the details in his book: Social Security Disability Revealed - Why it’s so hard to access benefits and what you can do about it. In this Episode: Sean explains how StorQuest made it so ea...
212 - Wheelchairs: If You Help, This is For You
April 03, 2023 07:01 - 51 minutes - 41 MBManeuvering a wheelchair presents many situations that are much different than a person who uses their legs to get around. When you offer to help someone in a wheelchair, here are a few things you should keep in mind. In this Episode: Kyle checks out a new section of bike trail so Sean wants to make sure he does it safely. You Got This, Mental Health featuring Kate Walker - Depression is common for people living with Rare Disease - Kate shares a bit of her experience dealing with d...
211 - Thriving with Duchenne, RDD 2023
March 27, 2023 04:05 - 53 minutes - 42.8 MBFor Rare Disease Day 2023, we were honored to moderate a virtual panel with our friends at Jett Foundation. The theme was Thriving with Duchenne; a Rare Disease Day event focused on mental health and anxiety and it features a diverse panel of patients, caregivers, a life coach, and a Psychologist. Duchenne Muscular Dystrophy (DMD) affects mostly males and causes progressive muscle damage in the entire body. It is the most common fatal pediatric disorder. Duchenne has no cure. But the ...
210 - Death and Sex - Buckle Up!
March 20, 2023 07:01 - 56 minutes - 45.6 MBIn this Episode: You Got This, Mental Health - Our friend Shelley Bowen (Ep 140) takes us through her experience having the hard talk about death. The Dudes are quite uncomfortable talking about SEX, especially sex and disability. So we welcome Jennie Williams from Enhance the UK to introduce the topic. Thank you notes - Kyle's Condo Community - Old Forge Crossing, and a backwards thank you for StorQuest. This episode happens to contain two topics that we’ve never addressed in depth....
209 - How A Mom Launched The First Drug Approval in FA
March 13, 2023 07:01 - 55 minutes - 44.3 MBIn this Episode: You Got This, Mental Health - Feeling seen and heard. Some of the responsibilty is on you. Can a single person make a difference? The amazing story of the first approved drug for Friedreich's ataxia (FA) Thank you notes - Reata Pharmmaceuticals, and Kyle's landlord at work. As the story goes, in an effort to do whatever she could for her son who lives with Friedreich's ataxia (FA), a concerned mother connected a few important dots about science and the pharmaceuti...
208 - Is There a Wrong Way?
March 06, 2023 08:01 - 32 minutes - 26.7 MBIn this Episode: The very first treatment for Friedreich's ataxia (FA) was approved last Tuesday! A deep dive into this next week. You Got This, Mental Health - There's not one "right" direction in life. Keep moving forward and making progress. Thank you notes - Clinical Team at Children's Hospital of Philadelphia and Sean's Personal Barista It’s easy to second guess our choices and doubt our decisions. Although there may be more efficient steps to take or faster directions to fo...
207 - Asking For Help: Pride vs. Practicality
February 27, 2023 08:01 - 44 minutes - 36.2 MBIn this Episode: How Kyle ended up at Cracker Barrell for chicken fried steak at lunchtime You Got This, Mental Health featuring Andra Stratton - Managing expectations for drug development Asking for help is complicated. The Dudes talk through some of the different scenarios that make it so. Thank you notes - Gail Moore We all need help sometimes. However asking for, and receiving help are not straight forward. Sometimes our pride gets in the way of other people trying to offer...
206 - Why Authenticity Matters at Home & Work
February 20, 2023 08:01 - 43 minutes - 35.2 MBIn this Episode: Dr. Kyle gives his advice. You Got This, Mental Health - Self Image Audrey Greenberg is the CBO of Discovery Labs and the Center for Breakthrough Medicines. She talks with The Dudes about how authenticity can benefit all of us. Thank you notes - Bill at Meineke & Taylor Wohler When you come as you are, others feel free to bring their authentic selves to the conversation. This is one of the many things we took away from our conversation with Audrey Greenberg, CB...
205 - Finally, A Dating App For People With Disability
February 13, 2023 08:01 - 52 minutes - 42.5 MBIn this Episode: Almost a year later, Kyle gives an update on his wheelchair drama. You Got This, Mental Health featuring Andra Stratton - Managing our expectations for Drug Development. The Dateability App - Designed by someone with a disability for the disabled community. Thank you notes - Dr. Anna Stepanova & Aaron Fisher After learning of her own disability and chronic illness, Jacqueline was exposed to a persistent ableist mentality and she wasn’t a fan. This showed up a lot ...
204 - What If Kindness Isn't The Answer?
February 06, 2023 08:01 - 40 minutes - 32.2 MBWelcome to Season 9! Dolly Parton wants to see more kindness in 2023. However if you ask Sean, kindness is not the issue - it's awareness of others around you. It will make sense after you listen. Sean's column on the subject: No Good Excuse This episode brought to you in part by Horizon Therapeutics. In honor of Rare Disease Day, the #RAREis Global Advocate Grant program is awarding 50 grants totaling $250,000 to global patient advocacy organizations working to support the community....
203 - Reason vs Excuse: It's Up To You
November 28, 2022 05:01 - 32 minutes - 26.2 MBThere's a common debate going on in many of our heads when it comes to committments. Whether it's meeting a friend for coffee, or going to a concert with a group, we have to decide if we can make it. If we decide not to go or even worse, cancel at the last minute, is it for a legit reason or are we just making an excuse? Ultimately that's for you to decide for yourself... Resources mentioned in this episode: Intro post for Sean's column: No Good Excuse 2DD episode 178 - Man Turning ...
202 - Addressing Independence and Accessibility with Rare Disease
November 21, 2022 08:00 - 42 minutes - 34.2 MBMaking the transition to independence is difficult to begin with. It is further complicated if you have a rare disease. Lauren Riggs joins The Dudes to talk about her recent experience moving away from home to go to school at University of Oklahoma and then grad school in Texas. Lauren lives with Friedreich's ataxia (FA). Her own journey with accessibility leads her to facilitate accessibility for others. During this episode, Lauren explains the Spoon Theory which many people living with r...
201 - How Does Positivity Become Toxic?
November 14, 2022 08:00 - 53 minutes - 43.3 MBWhen Katie Lloyd's son was diagnosed with a rare, lifethreatning disease, she began to notice that people around her reacting to the news in some unintentionallyinsensitive ways. When we witness someone going through a difficult situation, our first impulse is to say something encouraging: "Chin up!" "The Sun will come out tomorrow". However, responses such as this can be counterproductive because they lack empathy and understanding. Instead, perhaps we should simply acknowledge the diff...
200 - State of the Podcast and A Few Favorite Moments
November 07, 2022 02:11 - 50 minutes - 41.2 MBWe have been doing this for 6 years - we're still friends, and we hope a few people have enjoyed listening. Let's celebrate episode 200 with a little reminiscing, a few old snippets, and a brief look at the future of the show. Some of our favorite epispdes that we mentioned: 055 - Facing the Realities of Physical Changes 073 - Jeff Bell Part 1 - What is OCD? Jeff's cause: The A2A Alliance | Adversity to Advocacy 083 - Reasons to Push Our Limits 166 - Ultra Rare Drugs at no Cost t...
199 - RAVE: A Principle Everyone Ought to Consider
October 31, 2022 06:07 - 45 minutes - 36.7 MBA guiding principle Sean has adopted from his employer applies to every area of life - Respect, Appreciate, and Value Everyone, a.k.a RAVE. As a Fortune 100 Best Companies to Work For, Nugget Markets, Inc. is careful with the culture they foster and honor. In this episode, Sean shares a glimpse into this particular core value that is worth everyone’s consideration. A couple of mentions in Episode 199: Episode 040 with Arash Bayatmakou CanDo’s Keto Krisp. Listen to ep198 for a discount...