102 - Four Tips for Making Decisions
Two Disabled Dudes - Living with Urgency
Release Date: 03/15/2020
252 - NFL Plans Crushed, His Response Changes Lives
Two Disabled Dudes - Living with Urgency
In episode 252, Rob Long, executive director of , 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 recovery process. He reflects on the emotional toll of accepting his diagnosis and navigating through post-traumatic stress disorder (PTSD) in the years following. Also in this episode: Kyle and Sean chat about squishy PB & J Rare Resilience: Nathan Peck, CEO of ...
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251 - From Canes to Canines: Linda's Path to Mobility
Two Disabled Dudes - Living with Urgency
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 tasks he assists her with, including laundry! Additionally, Linda shares her involvement in the rare disease community, particularly her role in co-founding the Nebraska Ataxia (Now called ), a support group that has grown significantly over the...
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250 - Thriving with Duchenne - Rare Disease Day with Jett Foundation
Two Disabled Dudes - Living with Urgency
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 - Software Engineer, Jett Foundation Board of Directors, living with Limb-girdle Colin Werth - IT Specialist, International Traveler, living with Duchenne Amanda Becker - Mom to individual living with Duchenne The conversation covered topics such...
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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...
info_outlineWe encounter decisions constantly. Some are simple with clear answers like "Should I do the dishes today?" but some are complex and consequential like "Should I cancel upcoming travel due to coronavirus?".
The Two Disabled Dudes believe that Life is about How We React. How we think when we are faced with decisions and how we weigh out the potential consequences can have an impact on how we react.
In this episode, the dudes discuss 4 simple tips to help us think about the decisions in our lives:
- Remove the emotion from the equation - Many tough decisions in our lives evoke abundant emotion which can often cloud our reasoning. If we can temporarily remove emotion from the situation as we are thinking about the decision, it will help us focus on the facts and make an objective decision.
- Ask yourself "How does this affect the outcome?" - Sean and Kyle use the example of making the decision to sit down in a wheelchair or purchase an adaptive van. They talk about the face that these decisions do not change hte goal or the purpose in life, they just change the method we use to get there.
- Remove finances from the situation - If we think about it, it's clear that there are things in life that are more valuable than money. Sometimes, we need to let our health, time, or relationships win out over financial considerations in our lives. In this episode, Sean suggests that we can change the way we think about a decision by removing finances from the situation. He's not saying that we need to stop thinking about finances all together but if we temporarily remove money from the situation in our mind, it can help us think more clearly about things that may matter more to us.
- Discuss with close friends and family - This is something our past Guest, Jeremy Cowart talked about. Our friends and family know us best, and when we are thinking about a tough decision it is valuable to talk with them about so we can solidify our thinking in our own heads, and get a third party perspective who might be able to provide sound advice.
This is only a taste of the conversation. Listen to this episode and see if you can relate - and then leave a comment below with your techniques for confronting the decisions in your life.