Two Disabled Dudes Podcast

For our second interview before Rare Disease Day (Feb 28), we chat with Max Bronstein, Chief Advocacy and Science Policy Officer at The Everylife Foundation for Rare Diseases. The goal of the Foundation is to help advance innovation in the rare disease community; to advance knowledge and methods of support for those with a rare disease, and to ultimately look towards developing and enabling access to treatments or cures. Max is a scientist at heart; he has been published in Nature and The New England Journal of Medicine which makes him a great ally in raising awareness of rare diseases. He uses his background in his job at The Everylife Foundation in two big ways. One way that he uses his science background is what he calls regulatory issues. He does this by continuously holding meetings with large health and biotech and pharma partners. He speaks directly to the doctors and scientists at the forefront of cutting edge research in health and medicine and reminds them of the reality of rare diseases, a field of

Nicole Boice

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

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.