117 - What does Team Gleason have in Common with Google?
Two Disabled Dudes - Living with Urgency
Release Date: 08/30/2020
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...
info_outline 249 - 20 Years in the Making: REATA's Story of SkyclarysTwo 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...
info_outline 248 - Everyone Holds a Piece w/ FARA CEO, Jen FarmerTwo 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:
info_outline 247 - Tenacity and the Power of PersistenceTwo 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...
info_outline 246 - Empowering Accessibility, One Review at a TimeTwo 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,...
info_outline 245 - Settle or Soar? Embracing UncertaintyTwo 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:
info_outline 244 - Change & Consistency with Progressive DiseaseTwo 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:
info_outline 243 - EveryCure and the Power of Collaboration w/ Dr. David FajgenbaumTwo 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_outline 242 - Dave Lynch: 27 Years, 700+ Patients, and the First TreatmentTwo 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:
info_outline 241 - Feeling Helpless? Here Are 4 Ways To HelpTwo 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...
info_outlineBlair Casey is the Assistant Executive Director of Team Gleason - an organization founded by former NFL player Steve Gleason. The organization is committed to providing for and finding solutions for persons living with ALS. Team Gleason’s staff and volunteers work tirelessly every day to empower those living with ALS to live with continued purpose and as productively and independently as possible.
Blair joins the Dudes to talk about their work to support Google's Project Euphonia and how we can all work together to improve voice recognition for people who experience disarthria.
To find out more and contribute your voice samples to the effort, visit: teamgleason.org/projecteuphonia