252 - NFL Plans Crushed, His Response Changes Lives
Two Disabled Dudes - Living with Urgency
Release Date: 05/06/2024
Two Disabled Dudes - Living with Urgency
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, Leadership Development, and Uplifting Experiences. Rob reflects on the organization's impact, sharing a touching story of how a seed grant recipient's research saved his life. This personal connection underscores the profound ripple effect of...
info_outline 252 - NFL Plans Crushed, His Response Changes LivesTwo 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 ...
info_outline 251 - From Canes to Canines: Linda's Path to MobilityTwo 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...
info_outline 250 - Thriving with Duchenne - Rare Disease Day with Jett FoundationTwo 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_outlineIn 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 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 Cure VCP Disease
Links and resources:
- Route map for the Dude's ride in India
- Rob's previous full episode
- Episode with Rob's Rare Resilience segment
- Visit our segment partner: #RAREis