Two Disabled Dudes

A weekly Education podcast
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Episodes of Two Disabled Dudes

Marfan Foundation Annual Conference 2019 The Marfan Foundation is currently celebrating 40 years of service to patients and families affected by Marfan Syndrome and other related conditions. We had the honor of participating in their
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, borrowing an idea we found in our friend, Kendall Harvey's colum
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
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
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
This was the 43rd annual National Tay-Sachs and Allied Diseases (NTSAD) family conference and we were honored to moderate the opening session - a panel with Sarah, Kevin, and Staci. The video that Sean referenced near the beginning o
User reviews and social media can be used to affect change in business and society.  It gets out of hand when users take advantage of the power that is in their hands.  Listen as the dudes discuss Social Media and this new thing called Bluetoot
Season 6 starts now with the introduction of a new segment called 'Picks for Season Six'. Today the Dudes pick their favorite podcasts of the moment. Kyle: Conan O'Brien Needs a Friend Sean: At the Table with Patrick Lencioni
Sean just turned 40.  Happy Birthday Sean!  Kyle turns 40 in a few months. So what does this have to do with drugs?  The milestone brings a question into focus:  What if the treatment or cure for FA doesn't come in our lifetime.  Listen for th
Aaron Smith is uncomfortable on stage as himself, but as the King of Rock and Roll he owns the stage. Aaron was bullied when he was young because he was different than other kids.  He didn't care about the same things and sometimes he di
The Top 5 Pet Peeves get Sean a little worked up so he continues with a rant about his gym and accessibility.  A conversation with the manager leaves Sean unsatisfied because he's not confident anything will change as a result of his feedback. 
Tim Walbert is CEO at Horizon Therapeutics. He has been at the helm as they've taken several products to market. Listen as he talks about the different aspects of drug development and pricing. Tim also lets the dudes know that perhaps Sean's
As a clinical coordinator at Children's Hospital of Philadelphia (CHOP), Jen Farmer gained years of experience designing and operating clinical trials. Now as the CEO at the Friedreich's Ataxia Research Alliance (FARA) she uses that experience
The pre-clinical stage of drug development is largely about safety - answering the question 'will a drug be well tolerated in people?' However, Kristina Bowyer of Ionis Pharmaceuticals helps us understand that the patient voice should be integ
Part 2 of our Drug Development Series introduces John Crowley, the CEO of Amicus Therapeutics.  He is also a funny and compassionate rare disease Dad.  Join us as we learn life lessons and how to start a company - and Sean learns that a million
This is the LAUNCH of the Two Disabled Dudes Drug Development Series.  We have 5 experts lined up to field our questions about the process and how we as patients can insert our influence. This episode is an overview of the Drug Developme
How do we build an effective Global Rare Disease community?  It all starts with sharing stories and ideas.  Join the dudes as they hear Manish Gore's story about Alport Syndrome, and discuss the differences between the US and India and the Rare
A few weeks ago, Sean read an engaging article from the Huffington Post called How to Know if You're an Interrupter or a 'Cooperative Overlapper'.  The discussion of this article lead to an exploration of issues on the endless video conference
We sent Shelley a 2DD 2021 Desk calendar.  She sent back pictures of her brother, Jeff.  That sparked a heartfelt conversation about her family and some of the experiences in her life with her brother.  Join us as Shelley shares her experiences
Sometimes we wish there was an instruction manual for life's transitions. How do we decide when it's time to make a transition to a walker or wheelchair, power chair, hand controls - and how does ego play into the situation?...Listen as the dud
"There is real power in not caring what others think." Ben's Friends is an online social network for people with rare diseases.  Ben Munoz started it after suffering an AVM in 2006 and undergoing multiple brain surgeries.  During his rec
To honor Rare Disease Day, we invited our friend Dr. Al Freedman back on to talk about how people living with Rare Disease (like Kyle and Sean) can remain proud even if they are not proud of everything about themselves.  Dr. Al says a big part
What you we do when things do not go as planned.  Your life feels like it's falling apart, and you need to rebuild part if not all of your vision for your future.  The dudes have a few thoughts on how to proceed based on the rebuilding they've
What you we do when things do not go as planned.  Your life feels like it's falling apart, and you need to rebuild part if not all of your vision for your future.  The dudes have a few thoughts on how to proceed based on the rebuilding they've
In the last couple episodes we talked about the importance of forming a vision for your future.  This time we take it a step further with a few thoughts on how to put that vision into action.
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