249 - 20 Years in the Making: REATA's Story of Skyclarys
Two Disabled Dudes - Living with Urgency
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...
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248 - Everyone Holds a Piece w/ FARA CEO, Jen Farmer
Two Disabled Dudes - Living with Urgency
In this insightful interview with Jen Farmer, CEO of the , 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: Thank you notes: Jakob in Austria and Kelly at The Venetian. Links and resources: Jen's Previous episodes:
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247 - Tenacity and the Power of Persistence
Two Disabled Dudes - Living with Urgency
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 episode Newsworthy - Thank you notes: Kyle's bike mechanic and the Vertiball massager Links and...
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246 - Empowering Accessibility, One Review at a Time
Two Disabled Dudes - Living with Urgency
In this episode, we discuss the groundbreaking work of , 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,...
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245 - Settle or Soar? Embracing Uncertainty
Two Disabled Dudes - Living with Urgency
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 Newsworthy - Thank you notes: Kyle's driving instructor and Sean's friend in Miami Links and resources:
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244 - Change & Consistency with Progressive Disease
Two Disabled Dudes - Living with Urgency
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 confusion Newsworthy: Thank you notes: A vacation buddy and fake plants Links and resources: Sean's column:
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243 - EveryCure and the Power of Collaboration w/ Dr. David Fajgenbaum
Two Disabled Dudes - Living with Urgency
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...
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242 - Dave Lynch: 27 Years, 700+ Patients, and the First Treatment
Two Disabled Dudes - Living with Urgency
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:
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241 - Feeling Helpless? Here Are 4 Ways To Help
Two Disabled Dudes - Living with Urgency
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...
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240 - Adapting to Life's Curveballs
Two Disabled Dudes - Living with Urgency
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: 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. ...
info_outlineA few weeks ago, Sean read an engaging article from the Huffington Post called How to Know if You're an Interrupter or a 'Cooperative Overlapper'. The discussion of this article lead to an exploration of issues on the endless video conference calls that have become a big part of our lives lately.
Kyle still thinks the term 'Cooperative Overlapper' is just a made up term to make Sean feel better but you be the judge.