150 - Drugs, Turning 40 & The Future
Two Disabled Dudes - Living with Urgency
Release Date: 05/30/2021
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,...
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_outline 240 - Adapting to Life's CurveballsTwo 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_outline 239 - Season Premier - Are You a Doer or a Talker?Two Disabled Dudes - Living with Urgency
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:
info_outline 238 - Season Finale - The Dynamics of FriendshipTwo Disabled Dudes - Living with Urgency
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...
info_outline 237 - The Vital Role of Caregivers in Rare Disease AdvocacyTwo Disabled Dudes - Living with Urgency
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...
info_outlineSean just turned 40. Happy Birthday Sean! Kyle turns 40 in a few months. This milestone brings a question into focus: What if the treatment or cure for FA doesn't come in our lifetime. Listen for thoughts from the dudes.