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.
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144 – DD pt2: Do Good and…with John Crowley
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 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
143 – DD pt1: Half a BILLION Dollars!?
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). She has an impressive resume and a great sense of humor. She went from academic science, to big pharma, to venture capital, to nonprofit, and now she graciously shares her knowledge and wisdom with us.
Our next episode features John Crowley who is played by Brendan Fraser in the movie Extraordinary Measures.
142 – A Dedicated Advocate in India
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.
Manish's Blog, Doting Beans: www.hope4kidneys.info
Organization for Rare Diseases India: www.ordindia.in
Mental Health, Zifcare, India: www.zifcare.com
Alport Syndrome Foundation of USA: www.alportsyndrome.org
Kidney Research UK: www.kidneyresearchuk.org
141 – Rude or Cooperative?
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 'Cooperative Overlapper' is just a made up term to make Sean feel better but you be the judge.
140 – A Sister’s Perspective on Bullying
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 - you may end up with a few nuggets that make you a better person.
Shelley Bowen is Director, Family Services and Advocacy at the Barth Syndrome Foundation: https://barthsyndrome.org
139 – Where The Hell Are The Instructions?
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 dudes discuss and search for answers.
Sean's column; No Good Excuse, "The 'Right' Time Can Be a Moving Target With a Progressive Disease."
Kyle and Sean are rock stars in my book. I love listening to their conversations and it seems I always learn something profound to take away.
A good listen! Thanks! Colleen
Listen to these Dudes!
Entertaining, smart, funny , provocative and personal. Keep cranking all the way to a cure!
Love this podcast!!!
Love this podcast!!!