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104 - His Brain Injury Created a New Mindset

Two Disabled Dudes - Living with Urgency

Release Date: 03/29/2020

Drugs, Turning 40 & The Future show art Drugs, Turning 40 & The Future

Two Disabled Dudes - Living with Urgency

Sean just turned 40.  Happy Birthday Sean!  Kyle turns 40 in a few months.  This milestone brings a question into focus:  What if the treatment or cure for FA doesn't come in our lifetime.  Listen for thoughts from the dudes.

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149 - An Elvis Presley Tribute Artist with Autism show art 149 - An Elvis Presley Tribute Artist with Autism

Two Disabled Dudes - Living with Urgency

Aaron Smith is uncomfortable on stage as himself, but as the King of Rock and Roll he owns the stage.

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148 - Why Sean Hates His Gym show art 148 - Why Sean Hates His Gym

Two Disabled Dudes - Living with Urgency

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.  He wants everyone to know that he remained calm during the interaction.  We'll count that as a win!

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147 - DD pt5: My view: Patients Get Medicine at Lowest Cost Possible - Tim Walbert show art 147 - DD pt5: My view: Patients Get Medicine at Lowest Cost Possible - Tim Walbert

Two Disabled Dudes - Living with Urgency

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 face needs to replace Kyle's on the wall at Horizon.

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146 - DD pt4: Why Sean Baumstark Is Banned From Clinical Trials show art 146 - DD pt4: Why Sean Baumstark Is Banned From Clinical Trials

Two Disabled Dudes - Living with Urgency

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 to design effective trials for the Friedreich's ataxia (FA) community - and she nicely puts Sean in his place when she states "the rules are there for your safety".

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145 - DD pt3: Pre-clinical & Tacos show art 145 - DD pt3: Pre-clinical & Tacos

Two Disabled Dudes - Living with Urgency

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 integrated into every stage of the process, including pre-clinical. Plus, Sean loses his focus. Enjoy!

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144 - DD pt2: Do Good and...with John Crowley show art 144 - DD pt2: Do Good and...with John Crowley

Two Disabled Dudes - Living with Urgency

John Crowley is 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 is quite large. Amicus Therapeutics: Extraordinary Measures (John's story), starring Brendan Fraser and Harrison Ford: https://g.co/kgs/u7uFgw

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143 - DD pt1: Half a BILLION Dollars!? show art 143 - DD pt1: Half a BILLION Dollars!?

Two Disabled Dudes - Living with Urgency

This is the LAUNCH of the Two Disabled Dudes Drug Development Series. 

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142 - Rare Disease in India show art 142 - Rare Disease in India

Two Disabled Dudes - Living with Urgency

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 Disease World.

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141 - Rude or Cooperative? show art 141 - Rude or Cooperative?

Two Disabled Dudes - Living with Urgency

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 calls that have become a big part of our lives lately.

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More Episodes

Jason Levy was a well-paid Silicon Valley executive when multiple accidents caused severe Traumatic Brain Injury.  His whole life changed and he found himself in much different circumstances than he had envisioned for his life.  

Through his struggles, Jason realized that he must let go of the old Jason and embrace the new one.  Once he realized this, he started to build a satisfying life on his new path.

Join us to learn lessons that anyone can apply to their own situation.