Best Sean Baumstark Podcasts (2024)

1
255 - Season Finale - We’re Riding the World’s Highest Road 44:57

1M ago44:57

44:57

In 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 altitude training masks. They also address concerns abo…

1
254 - From Dad to Advocate to CEO: John Crowley's Continued Commitment 50:02

2M ago50:02

50:02

This 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 on a journey of research and entrepreneurship, ultimat…

1
253 - Uplifting Athletes: Harnessing the Power of Sport for Rare Diseases 34:06

2M ago34:06

34:06

Rob 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 including The Young Investigator Draft, Lift for Life,…

1
252 - NFL Plans Crushed, His Response Changes Lives 47:02

2M ago47:02

47:02

In 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 brain tumor, leading to surgery and a challenging recove…

1
251 - From Canes to Canines: Linda's Path to Mobility 54:08

2M ago54:08

54:08

In 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 extensive training Cedric underwent, and the various …

1
250 - Thriving with Duchenne - Rare Disease Day with Jett Foundation 1:01:15

3M ago1:01:15

1:01:15

Our 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/Illustrator, Business Owner, living with SMA Chris Schlechty - Sof…

1
249 - 20 Years in the Making: REATA's Story of Skyclarys 51:14

3M ago51:14

51:14

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 narra…

1
248 - Everyone Holds a Piece w/ FARA CEO, Jen Farmer 43:42

3M ago43:42

43:42

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…

1
247 - Tenacity and the Power of Persistence 34:58

3M ago34:58

34:58

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 suppor…

1
246 - Empowering Accessibility, One Review at a Time 42:50

4M ago42:50

42:50

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 accessi…

1
245 - Settle or Soar? Embracing Uncertainty 35:39

4M ago35:39

35:39

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 travel …

1
244 - Change & Consistency with Progressive Disease 21:22

4M ago21:22

21:22

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 …

1
243 - EveryCure and the Power of Collaboration w/ Dr. David Fajgenbaum 50:36

4M ago50:36

50:36

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 unloc…

1
242 - Dave Lynch: 27 Years, 700+ Patients, and the First Treatment 43:57

5M ago43:57

43:57

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 de…

1
241 - Feeling Helpless? Here Are 4 Ways To Help 29:36

5M ago29:36

29:36

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…

1
240 - Adapting to Life's Curveballs 25:24

5M ago25:24

25:24

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 …

1
239 - Season Premier - Are You a Doer or a Talker? 35:37

5M ago35:37

35:37

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 …

1
238 - Season Finale - The Dynamics of Friendship 33:15

8M ago33:15

33:15

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 Du…

1
237 - The Vital Role of Caregivers in Rare Disease Advocacy 1:02:52

8M ago1:02:52

1:02:52

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 a…

1
236 - A Mom's Perspective on Devastation and Gratitude 42:49

8M ago42:49

42:49

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 c…

1
235 - Addressing the Epidemic of Wheelchair Damage by Airlines 43:00

8M ago43:00

43:00

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 through…

1
234 - World Duchenne Awareness Day - Jett Foundation 1:20:00

8M ago1:20:00

1:20:00

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 Carriers Common Misconceptions About Female Carriers Challenges of Transitioning fro…

1
233 - Should Disability Heighten Our Sense of Responsibility? 24:53

8M ago24:53

24:53

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…

1
232 - Can Rare Disease Create Heroes? 39:03

9M ago39:03

39:03

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 …

1
231 - Speak Up, Stand Out: Silence is Not Advocacy 31:52

9M ago31:52

31:52

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 meeting…

1
230 - Navigating Mental Illness: Parent Stories 49:11

9M ago49:11

49:11

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 …

1
229 - Exercise and Motivation: Challenges of Disability 36:51

9M ago36:51

36:51

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…

1
228 - Podcasting Insights and Reflections 22:46

10M ago22:46

22:46

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 Movement This episode brought to you in …

1
227 - Pushing Boundaries: A Blind Athlete's Story 36:09

10M ago36:09

36:09

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 te…

1
226 - Navigating Disability & Long-term Relationships 30:36

10M ago30:36

30:36

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…

1
225 - From Preterm to Pediatrician: Tyler's Triumph with CP 49:42

10M ago49:42

49:42

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 giv…

1
224 - The Power of the Patient Voice - BIO International 44:56

11M ago44:56

44:56

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-Founde…

1
223 - Attitudes Can Change - Let's Talk Debra 43:10

11M ago43:10

43:10

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 …

1
222 - Is Technology Good or Bad? Yes. 32:28

11M ago32:28

32:28

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 hig…

1
221 -Disability & Fun Can Coexist 30:02

11M ago30:02

30:02

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 u…

1
220 - Season Finale - How Much is Too Much? 46:15

1y ago46:15

46:15

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 p…

1
219 - Physical Therapy Goals with Dr. Gretchen Hawley 55:19

1y ago55:19

55:19

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 prac…

1
218 - Accessibility: Inconvenient or Impossible? 51:34

1y ago51:34

51:34

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…

1
217 - Are Disabled Students Forgotten On University Campuses? 57:00

1y ago57:00

57:00

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 di…

1
216 - The Emotional Response To Research 37:43

1y ago37:43

37:43

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 featu…

1
215 - Birthday Parties Can Be Tough with Guest Host: Effie Parks 47:53

1y ago47:53

47:53

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 a…

1
214 - Inspiration Porn - Are We Part of the Problem? 43:41

1y ago43:41

43:41

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…

1
213 - Why is Government so HARD? 59:58

1y ago59:58

59:58

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 Disab…

1
212 - Wheelchairs: If You Help, This is For You 51:02

1+ y ago51:02

51:02

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 Heal…

1
211 - Thriving with Duchenne, RDD 2023 53:09

1+ y ago53:09

53:09

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 ma…

1
210 - Death and Sex - Buckle Up! 56:43

1+ y ago56:43

56:43

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 - Ol…

1
209 - How A Mom Launched The First Drug Approval in FA 55:09

1+ y ago55:09

55:09

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 f…

1
208 - Is There a Wrong Way? 32:32

1+ y ago32:32

32:32

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 e…

1
207 - Asking For Help: Pride vs. Practicality 44:01

1+ y ago44:01

44:01

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. …

1
206 - Why Authenticity Matters at Home & Work 43:48

1+ y ago43:48

43:48

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 the…

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