Old men know a lot. 

Combined, these two Dudes have 37 years of experience living with Friedreich's ataxia/rare disease/disability, and we made some observations along the way.

In this episode, using an idea we found in our friend, Kendall Harvey's column on Friedreich's Ataxia News, we explore what we would say to our newly diagnosed selves.  

It's a very emotional episode and we hope you find value in it.

Anthony DeVergillo describes himself as an optimist.  He sees a problem and inserts himself to find a solution. Specifically in the area of video game accessibility, Anthony is motivated to make an impact with the joystick he invented to allow people with disabilities access to the games they love.  The project is called Overjoyed.

Listen to our interview with Anthony and get motivated to improve the world around you as Sean tries to wrap his head around airplane accessibility.

Links:

Anthony's Interview for The Playability Initiative.

Anthony on social media:

• Twitter
• LinkedIn

Connect with Anthony and others: https://ourodyssey.org/

Describing our challenges to another person is a powerful way to face them and find a way to think around them so these challenges don't become a roadblock in our lives.  The Dudes feel fortunate to have each other to share with and to have you listening!

Discussion questions provided by Branding Science

August is SMA Awareness Month so we had a conversation with Nick Sinagra to learn about SMA and his journey with this rare disease.  Nick is a true leader for all the things he has accomplished and continues to accomplish, and for the attitude he brings to all that he does.  Plus hear about Nick's experience with Spinraza, a drug developed and FDA approved to treat SMA.

This was the 43rd annual National Taysachs and Allied Diseases (NTSAD) annual conference and we were honored to moderate a panel with Sarah, Kevin, and Staci.

The video that Sean referenced near the beginning of the episode: https://www.youtube.com/watch?v=XFEXsquCA8U

Learn More about the family conference at https://ntsad.org/index.php/2021-annual-family-conference

More about NTSAD at https://ntsad.org