Two Disabled Dudes

In the rare disease community, strength is in unity and supporting one another. February 28th is globally recognized as Rare Disease Day. Since Friedreich’s ataxia, the disease shared by us Dudes, is considered a rare disease, five episodes will come out in February, instead of one episode every other week, as normal. We explain what is meant by “rare diseases” and how rare they really are. This episode contains snippets of three interviews that will be released in their entirety later in the month. Nicole Boice, the CEO of Global Genes, speaks about the importance of knowledge in the rare disease community; only by knowing all we can about whatever disorder we may face can we successfully move forward. In the second snippet, Max Bronstein of the Everylife Foundation for Rare Diseases reminds us of the importance of policy issues when seeking treatments for rare diseases. Finally Paul Melmeyer from the National Organization of Rare Disorders (NORD) emphasizes the benefits of recognizing Rare Disease Day, and what that has done for the rare disease community overall. On February 27, the day before Rare Disease Day, our interview with Ron Bartek, the president and cofounder of the Friedreich’s Ataxia Research Alliance, will be released. The Two Disabled Dudes invite you to help us spread awareness this month.

There is a lot of apprehension that comes along with travel, especially when also factoring a disability into the situation. There a few important things that help us battle that apprehension including a strong game plan informed by the experiences of others, and the emotional flexibility to roll with challenges and continue to move forward. In this episode, Kyle and Sean share insights from listener feedback and personal stories of their travels.

Travel is freedom. On the surface disability seems to limit that freedom. But it’s not limited, just different. But you need the right mindset to overcome obstacles. Join us as we share a conversation about what informs our approach to travel.

What is self image and why is it important? Join us as we discuss self image and things we can think about to help promote a healthy one.

Life happens and many things are out of our control. What is in our control is how we react to those situations. Our reactions often define the outcome of a situation - good, bad, and anywhere in between. In this episode we talk about our reactions to challenging circumstances. We also give a few examples of people that have had a positive and productive reaction to challenging circumstances.

Welcome to the show! In this episode Kyle and Sean talk about creating the podcast and their connection through the diagnosis of Friedreich's ataxia (FA). The focus is on the empowerment they get by connecting to the FA community, the Rare Disease Community, and anyone with similar experiences.