Two Disabled Dudes - Living with Urgency

Two Disabled Dudes - Living with Urgency

The 2DD podcast is about setting sights beyond the challenges in your life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster, and practical thoughts that you can apply to your life with this podcast. Hosts Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities. However both dudes have completed several long distance bike rides including “The World’s Toughest Bike Race” - Race Across America (RAAM). Their RAAM journey is the subject of an award winning documentary called The Ataxian. Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch. Join us, subscribe, and tell a friend!

Episodes

May 9, 2021 48 min

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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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".

Jen...

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April 26, 2021 42 min

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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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: https://www.amicusrx.com/

Extraordinary Measures (John's story), starring Brendan Fraser and Harrison Ford: https://g.co/kgs/u7uFgw

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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 Development Process which helps us understand how to avoid spending half a billion dollars on a dead end.

Barbara Tate is the Chief Scientific Officer for the Friedreich's Ataxia Research Alliance (FARA)...

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April 4, 2021 29 min

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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March 28, 2021 37 min

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.

Kyle still thinks the term 'Cooperative Overlapper' is just a made up term to make Sean feel better but you be the ...

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We sent Shelley a 2DD 2021 Desk calendar.  She sent back pictures of her brother.  That sparked a heartfelt conversation about her family and some of the experiences in her life with her brother Jeff.  Join us as Shelley shares her experiences - you may end up with a perspective that makes you a better person.

Shelley Bowen is the Director of Family Services and Advocacy for the Barth Syndrome Foundation: barthsyndrome.org

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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...Listen as the dudes discuss and search for answers.

Sean's column; No Good Excuse, "The 'Right" Time Can Be a Moving Target With a Progressive Disease."

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March 8, 2021 28 min

"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 recovery he was feeling alone and scared so he reached out to others to form Ben's Friends.  Ben joins the dudes to impart his knowledge and wisdom from his years of leading Ben's F...

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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 of it is gratitude and focusing on your strengths.  Listen to hear all the details including the strengths of his son Jack who has been living with SMA for 25 years.

Reach out to Dr. Al at: f...

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February 22, 2021 27 min

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 had to do in their lives.

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February 22, 2021 21 min

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 had to do in their lives.

**This is a 2 part episode so if you haven't listened to part 1, check it out.**

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February 14, 2021 37 min

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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February 8, 2021 35 min

Last week we talked about the importance of creating a vision of what we want so we can work each day toward that goal.

An important piece of forming that vision is thinking about the things we don't want to avoid the ruts that are going to keep us from our goals.

Enjoy the conversation and don't forget to subscribe.

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Where do you want to live?  How much money do you want to make?  How big is your house gonna be?  Car? Job? 

It's important to dream about these things but none of it is going to happen on accident.  

In this episode Sean and Kyle talk about what they want out of life and the importance of taking steps today toward those things.

They also introduce a new segment for the show with their Top 5 Movies.  Enjoy!

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January 3, 2021 52 min

Meaningful conversations with friends are what we love - and that's what we thoroughly enjoyed about our 2DD Virtual Forum with the XHL Network.  Listen to our 4 panelists for perspectives on living with XLH that relate to any walk of life.

If your organization is planning to engage your community in 2021 either live or virtually, the 2DD Forum may be a good fit.  Check out an overview at twodisableddudes.com/forum and reach ou...

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It is clear to these dudes that the patient is at the center of everything that happens at Ultragenyx Pharmaceutical.  That's why we are proud to have moderated a panel at the virtual Ultragenyx Rare Family Day This Year. 

https://www.ultragenyx.com/

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We all know that Sean likes to complain, and apparently Kyle Does too.  Listen to help The Dudes get a few things off their chest.  They were a bit relieved after recording this episode and hopefully you will feel relieved after listening.

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November 23, 2020 38 min

Effie Parks immediately connected to rare disease podcasts when her son Ford was diagnosed with CTNNB1.  However she soon caught up with all of the episodes and came to the end of her lifeline.  So she created the thing that she needed the most.  She connects with other rare disease parents and many others in the Rare Community through her incredible podcast Once Upon a Gene.  Listen to this episode to get insight on the value of c...

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