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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147 – DD pt5: My View: Patients Get Medicine at Lowest Cost Possible – Tim Walbert
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.
146 – DD pt4: Why Sean Baumstark Is Banned From Clinical Trials
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 shares the principles that guide clinical trials and a few tips for those who choose to participate.
FARA - curefa.org
145 – DD pt3: Pre-clinical & Tacos
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!
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
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!!!