Two Disabled Dudes

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 perspectives on the challenges and rewards of drug development, as well as the transformative potential of scientific breakthroughs in improving patient outcomes.Also in this episode:Sean visits Golden 1 ArenaNewsworthy: Athlete With Cerebral Palsy Finishes The Barcelona MarathonThank you notes: Kyle's friends Blake & Dan and Sean's friend Taylor Links and resources:rideATAXIA Hometown San Luis Obispo, CA. May 11, 2024 Nic Novicki's 2DD EpisodeColin's previous episode: 035 - Drug Development - LIVE at REATA PharmaceuticalsTeam FARA Himalayas Fundraising page Alex Roca finishing Barcelona MarathonNewsworthy music courtesy of Zapsplat.com

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 I can drink a margarita’Thank you notes: Jakob in Austria and Kelly at The Venetian.Links and resources:Jen's Previous episodes: DD pt4: Why Sean Baumstark is Banned From Clinical Trials | How a Mom Launched the First Drug Approval in FANewsworthy music courtesy of Zapsplat.com

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 episodeNewsworthy - International Day for Social Inclusion & Official Release of the Overjoyed Accessible Controller on the Microsoft Store!Thank you notes: Kyle's bike mechanic and the Vertiball massagerLinks and resources:Download the Overjoyed accessible gaming softwareNewsworthy music courtesy of Zapsplat.com

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 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:The airline snapped the arm off Kyle's wheelchairNewsworthy - Secretary Buttigieg Announces Proposed Rule to Ensure Passengers Who Use Wheelchairs Can Fly with DignityThank you notes: Michelle and her glass art, and Dawn the personable travel agent from AltourLinks and resources:RollMobility InstagramDenver Spring Fling Pub Crawl hosted by Roll and Dateability - April 27Sign open letter to improve accessibility on Airlines (GlobalGenes)Newsworthy music courtesy of Zapsplat.com

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 travelNewsworthy - 'Go On, Be Brave' documentary captures perseverance in face of ALSThank you notes: Kyle's driving instructor and Sean's friend in MiamiLinks and resources:Watch 'Go On, Be Brave' documentaryThe clip Sean mentioned: Making a hard decision? WATCH THIS | Dr. Ellen LangerNewsworthy music courtesy of Zapsplat.com

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 confusionNewsworthy: FOX 5 Las Vegas Surprise SquadThank you notes: A vacation buddy and fake plantsLinks and resources:Sean's column: The progressive nature of FA taught me to appreciate gradual changeNewsworthy music courtesy of Zapsplat.com

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 YOUTUBEAlso in this episode:Sean abandons his principlesNewsworthy: Here's what the starbucks of the future looks like. Starbucks has opened its first cafe designed to give customers with disabilities a more accessible store experience.Thank you notes: Make a Hole Stranger and Gas Station Jeep GuyLinks and Resources:EveryCureEveryCure Announces Arpa-H Funding at the White House!Castleman Disease Collaborative Network (CDCN)Chasing My Cure2DD Ep. 019 - Dr. David Fajgenbaum, Conquering Castleman Disease2DD Ep. 091 - Chasing our Cure with Dr. David Fajgenbaum2DD Ep. 092 - Why Humor is Important with Dr. David FajgenbaumNewsworthy music courtesy of Zapsplat.com

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:Sean's Sleep-talking escapades.Kyle Finally took his road test for his driver's license.Newsworthy: Light Up For Rare comes to a monument near you!Links and Resources:Light Up For RareNewsworthy music courtesy of Zapsplat.com 

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: Ever received a mysterious text from an unknown number? Kyle talks about receiving a letter regarding his DMV situation and the challenges he faces in navigating bureaucratic systems.Newsworthy from Esquire: Four Years After a Crash Left Him Paralyzed, BMX Star Paul Basagoitia Enjoys Riding More Than EverThank you notes: Sean - A curious coworker. Kyle - Mike and Diane Bryant (Dad and Mom)Links and Resources:Any One of Us documentary trailerPaul Basagotia InstagramNewsworthy music courtesy of Zapsplat.com

Adapting 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 their upcoming changes to the podcast production schedule, aiming for a more manageable approach.  Thank you notes: Sean: Football season's effect on crowds at the gym. Kyle's friend Joy, for planning an awesome game day partyLinks and Resources:Newsworthy music courtesy of Zapsplat.com

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 to know them on a deeper level

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:Once Upon a GeneThe Disorder ChannelGlobal Genes

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 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 & ResourcesRead one of Zach's stories and submit your own: Flyer 'just in shock' after watching wheelchair fall off baggage belt from a United flight 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: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 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 & ResourcesRegister Today: Friedreich's ataxia News Virtual Event, Nov 1Read: Matt's ColumnWatch: FARA FA Symposium Recordings 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 & 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 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 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 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: 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, 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:Dr. Sexton's WebsiteDr. Sexton's Book: God Bless These Little LegsDr. Sexton's Book: No Such Thing as Can'tThis 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: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?  Where's the line?  How does this line play into our vision and goals?Thank you notes - Ted Lasso, and Sean's Landlords.Links and Resources:Dr. Al's new website - RareCounseling.comSean's Article: Simple Questions Help Me Keep Life With FA in PerspectiveThis 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:Kyle talks about Team FARA's participation in Bike New York's Five Boro Bike Tour along with 30,000 other people.You Got This, Mental Health featuring Shelley Bowen - Shelley joins us again to talk about the value of a good therapist when facing life's challenges.Dr. Gretchen teaches us that listening and understanding are important aspects of a good physical therapist.Thank you notes - Team FARA Teammates and new friends Chris, Tierra, Chris, Kahlua & KaiLinks and Resources:Dr Gretchen InstagramFacebookYouTube The MSing Link Wellness ProgramThe MSing Link PodcastBook InfoBarth Syndrome FoundationThis 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:Sean tells us the latest in his dealings with StorQuest.  Spoiler: It's not good.You Got This, Mental Health - Sean and Kyle share similar stories of their wheelchairs rolling away from them. We all struggle. Sharing with others can help lighten the load.The Dudes talk about a recent experience at a hotel.  It helps expose some issues about accessibility.Thank you notes - An aquaintance at a laundromat, and Neighbor Melanie (the best!)Links and Resources:Episode 193 - Accessibility Matters: Air Travel is Not Exempt - with Mary CarusoThis 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.

For 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, Mental Health featuring James Miller - You might remember James from Episode 068.  James is a Psychotherapist and joins us to talk about the people we choose tto spend our emotional energy on.The Dudes talk to Noah Griffith about the difference he is making at Auburn University due to his disability.Thank you notes - A Chili's Host, and Airport Bathroom GuyLinks and Resources:James Miller's Book - Life Lessons: You Are The Expert On Your Life | A WorkbookNoah's Letter to the President of Auburn UniversityAuburn for all: Noah Griffith adevocates for accessible athletics experiencesThis 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.

Research 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 JOY and how we find our way there.The Dudes discuss the emotional response to the use of assistive technology.  Emotions can get heavy when we think about the need for these things.Thank you notes - Kyle's Socks and Friends that help move stuff Links and Resources:Branding ScienceHeidi Behr, LCSW, MSW, MPHThis 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.

This 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 Shelley Bowen - Grief is a process. Everyone grieves differently. It's ok to figure it out as you go. Listen to hear Shelley's wisdom. In an Effisode, Effie talks about a touching experience at a recent Birthday Party. Thank you notes - Rodney Samaco, Ph.D., PT with Dri Links and Resources: Barth Syndrome Foundation 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.

According 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 explore why we should brake that habit. The Dudes discuss how they might be perpetuating the idea of Inspiration Porn by benefiting from the attention that comes from having a disability. Thank you notes - A grocery store-apple-helper and a Chipotle cashier. Links and Resources: Matthew LaFleur's Article: The importance of resilience and other lessons from my diagnosis Stella Young's TEDx Talk: I'm not your inspiration thank you very much How to Avoid "Inspiration Porn" by Andrew Pulrang for Forbes.com 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.

As 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 easy for him to never do business with them again. You Got This, Mental Health featuring Lara Bloom - There are many challenges living with a disability. On top of the physical challenges, people with invisible disabilities often have a hard time getting strangers or even doctors to believe them - Lara shares her perspective and how the Ehler's Danlos Society is addressing the issue. Spencer Bishins gives us some insight into why it's so hard to access Social Security Disability Benefits. Thank you notes - Two nice people. Links and Resources: Bishins Publishing Ehlers-Danlos Society 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 aretrademarks of Reata Pharmaceuticals, Inc.

Maneuvering 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 depression. Sean brings his "Top Ten" list of annoyances while traveling in a wheelchair - constructive feedback for those who want to help. Thank you notes - The people who make bike trails happen, and Sean's editors at Friedreich's Ataxia News Links and Resources: Depression and anxiety in patients with different rare chronic diseases: A cross-sectional study 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.

For 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 individuals in this episode are determined to Thrive with Duchenne.

In 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. This is because we never had the words or the right people to guide us. Our feature conversation is with @enhancetheuk Founder & CEO, Jennie Williams who leads us on a deep dive into the world of sex and how it matters amongst disabled and nondisabled persons. Shelley Bowen also joins us again for a short chat on preparing for the tough conversation of advanced directives. Ep210 is fully packed, buckle up! Links and Resources: Undressing Disability Barth Syndrome Foundation

In 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 pharmaceutical industry.  When she decided to make a phone call to the Friedreich's Ataxia Research Alliance (FARA), she started a series of actions and events that eventually led to the approval of the first treatment for FA, SKYCLARYS.  Listen for the details.Links and Resources: Announcement: First Medication to Treat Friedreich's Ataxia Approved on Rare Disease Day! 

In 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 follow to get to our destination, is there ever a wrong way? Hear The Dudes share their experiences and perspectives. Links and Resources: Sean's Column: Moving in a Positive Direction | Living With FA Reinforces My Commitment to Making Progress

In 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 help. Links and Resources: Asking for help is so damn hard. Here's how to make it easier 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. Learn more and apply at rareiscommunity.com/grant

In 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, CBO of the Center for Breakthrough Medicines. Greenberg manages the 1.6 million-square-foot campus at the Discovery Labs King of Prussia, PA one of the largest facilities for life sciences and technology in the world. Links and Resources: Mental Health - Self Image 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. Learn more and apply at rareiscommunity.com/grant

In 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 in her dating life and she couldn’t find a dating app that she felt safe using and that helped her meet people that understood disability. So, she teamed up with her sister and they launched The Dateability App. Links and Resources: Mental Health Uplifting Athletes 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. Learn more and apply at rareiscommunity.com/grant

Welcome 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. Learn more and apply at rareiscommunity.com/grant

There'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 Into Stone - Joe Sooch This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts. The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts

Making 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 rare or chronic disease can relate to. This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts. The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts

When 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 difficulty and "hold space for each other." The Dudes agree that this is a topic that we can all learn from. Katie's blog: https://averyrareadventure.com/ This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts. The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts

We 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 to The Patient - Stan Crooke Stan's cause: n-lorem FOUNDATION 181 - Every Person Matters with Tom Hamilton This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts. The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts