Two Disabled Dudes-logo

Two Disabled Dudes

Health & Wellness Podcasts

Motivational Podcast - Life Beyond Circumstances

Motivational Podcast - Life Beyond Circumstances

Location:

United States

Description:

Motivational Podcast - Life Beyond Circumstances

Language:

English


Episodes

151 – Season Premier: Pandemic Observations

8/1/2021
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 and Kyle talk about some of the things they've been up to this summer which leads to some observations about specific areas of life the pandemic has affected. Enjoy! This summer, the Dudes rode over the bay bridge in CA with their friend Scott Wheelwright and a few...

Duration:00:40:53

Drugs, Turning 40 & The Future

5/30/2021
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 thoughts from the dudes.

Duration:00:29:36

149 – An Elvis Presley Tribute Artist with Autism

5/23/2021
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 didn't say the right things. His mind was somewhere else. Somewhere along the way he fell in love with the idea that people made a living from impersonating Elvis Presley. He gave it a shot and he was hooked. Listen as Aaron talks about becoming an Elvis tribute...

Duration:00:40:25

148 – Why Sean Hates His Gym

5/16/2021
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!

Duration:00:39:45

147 – DD pt5: My View: Patients Get Medicine at Lowest Cost Possible – Tim Walbert

5/10/2021
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. Horizon Therapeutics - https://www.horizontherapeutics.com/

Duration:00:48:29

146 – DD pt4: Why Sean Baumstark Is Banned From Clinical Trials

5/2/2021
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...

Duration:01:01:07

145 – DD pt3: Pre-clinical & Tacos

4/25/2021
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! Ionis Pharmaceuticals: https://www.ionispharma.com/

Duration:00:42:30

144 – DD pt2: Do Good and…with John Crowley

4/18/2021
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

Duration:00:54:27

143 – DD pt1: Half a BILLION Dollars!?

4/11/2021
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...

Duration:00:48:47

142 – A Dedicated Advocate in India

4/4/2021
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 Resources: 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...

Duration:00:30:06

141 – Rude or Cooperative?

3/28/2021
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 'Cooperative Overlapper' is just a made up term to make Sean feel better but you be the judge.

Duration:00:37:23

140 – A Sister’s Perspective on Bullying

3/21/2021
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

Duration:00:37:38

139 – Where The Hell Are The Instructions?

3/14/2021
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."

Duration:00:34:49

138 – We Only Have One Life to Live

3/7/2021
"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 Friends and the company he created. Ben's Friends: https://www.bensfriends.org/...

Duration:00:28:48

137 – Rare Disease Day Special with Dr. Al Freedman

2/28/2021
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. Learn about Rare Disease Day: rarediseaseday.org Reach out to Dr. Al at:...

Duration:00:40:38

136 – When It Hits The Fan – Part 1

2/21/2021
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.

Duration:00:27:33

136 – When It Hits The Fan – Part 2

2/21/2021
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.**

Duration:00:21:32

135 – Goals Don’t Accomplish Themselves

2/14/2021
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.

Duration:00:37:01

134 – Our Wants vs. Our Don’t Wants

2/7/2021
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.

Duration:00:35:55

133 – Season 5 Premiere – What do You Want out of Life?

1/31/2021
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: Top 5. This show is possible with your support. If you enjoy listening to Sean and Kyle please consider making a DONATION. 2021 is upon...

Duration:00:39:55