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Motivational Podcast - Life Beyond Circumstances

Motivational Podcast - Life Beyond Circumstances


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Motivational Podcast - Life Beyond Circumstances




132 – 2DD Forum with the XLH Network

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 and reach out to us at to discuss. Talk to you...


131 – 2DD Forum at Ultragenyx Rare Family Day

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.


130 – Season 4 Finale – More 2DD Grievances

We all know that Sean likes to complain, and apparently Kyle does too. Listen as 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. The video sean mentioned in the episode:


129 – She Created What She Needed – Effie Parks

Effie Parks immediately related 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 life line. So she created the thing that she needed the most. She discusses disability as diversity and connects with parents and many others in the Rare Community through her incredible podcast Once Upon a Gene. Listen to this conversation between Effie and the Dudes to get insight on the value of connecting to...


128 – Mental Health & Rare Disease – Dr. Al Freedman

In episode 123, The Dudes asked why we tend to pull away when things get hard such as with a Rare Disease Diagnosis or another life changing event. The discussion did not end with a clear answer so Sean and Kyle Reached out for some professional help. Enter Dr. Al. Albert Freedman, Ph.D. has a unique voice as a psychologist and the father of an adult son with a rare disease. He speaks at conferences nationally on challenges facing families of children with special health care needs, and...


127 – Does Your Disability Force Premature Decisions?

Kyle and Sean realize that the degenerative nature of Friedreich's ataxia (FA) has an impact on the timing of big decisions in their life. But does it cause them to jump into some things too quickly? Kyle moving away from Sacramento December 2010 Kyle thinks it caused him to get in over his head when he bought his first home. Is he doing it again? Listen as The Dudes wrestle with this topic. If you like this one, should try: 123 – Why Do We Keep Our True Selves Hidden?


126 – I’m Fine, Thanks – Chris Doveton

11/1/2020 Finding the strength to keep moving after a heart wrenching loss is a prime example of living life beyond circumstances. Via Chris and Anne are enjoying a loving marriage in the prime of their lives when Anne is diagnosed with a rare and fatal genetic disease. For ten years, Chris and Anne endure this terrible secret alone. After Anne's death, Chris, ravaged by crippling grief, realises that his survival depends upon him ridding himself of his...


125 – “I know you’re drunk, buddy”

Sean tells yet another story of someone thinking he is drunk, but this time the guy gets a little aggressive. Listen to hear the whole story and Sean's interactions with the landscaping company that the guy works for. If you enjoy this story of harsh misjudgement, you might enjoy the episode about Debra: 114 – Don’t Judge a Dude by His Wheelchair


124 – “Walk in my Shoes” – A Journey with Cystinosis

Cystinosis is a rare disease that causes life altering damage to the kidneys, eyes, muscles, pancreas and brain. Clint Moore's son, Chandler, lives with the rare disease. That's why Clint walks 57 miles on 5/7 to raise funds and awareness. Listen as the dudes discuss some life principles and talk about Clint's moving documentary that tells his family's story. Learn about the Cystinosis Research Network: Watch the documentary:


123 – Why Do We Keep Our True Selves Hidden?

Anyone who has listened to this podcast before has heard The Dudes go on and on about the power of community and the importance of connecting to others. So why is our first reaction to pull away when things get hard? Denial? Pride? Self-preservation? Fear? Listen as the dudes break down this complex topic. They probably need some professional help... This topic all started with a little column Sean wrote:


122 – Red Tape is Easier With Help

Government programs such as Social Security provide essential services for people with disabilities. But navigating through the bureaucracy can be a nightmare. That's why there are companies such as Allsup Disability Insurance Services and people like Mary Dale Walters - to help us make sense of it all! Listen as she gives us a great start to the conversation and provides resources for where to find out more. Find the e-book she mentioned here:...


121 – How to Join the rideATAXIA Global Challenge

Using our collective effort. participants in the rideATAXIA Global Challenge will power the team around the globe in 30 days. During this time the team will be introducing all of us to the brilliant minds behind the effort to treat and cure Friedreich's Ataxia. Listen to find out more from 4 of our friends. Get more info and register at or join Team #CrankinWithKyle HERE.Join us on Strava to contribute to the goal of traveling...


120 – What is Alport Syndrome? – Kevin Schnurr

In 2012, at the age of 26, Kevin Schnurr was unexpectedly diagnosed with Alport syndrome after being rushed to the hospital with high blood pressure. After two years on peritoneal dialysis, he received a living donor kidney transplant from a close friend in May 2014. Kevin’s desire to help others in the rare disease community led to him volunteering at Alport Syndrome Foundation (ASF) in 2012. He later served in a position as ASF Social Media Specialist in 2014 and part-time Patient Outreach...


119 – Are You Messy Like Kyle or Neat Like Sean

Sean and Kyle are polar opposites in so many different ways. But this is a strength rather than a weakness. This week the Dudes discuss their differences and why they work well together.


118 – Help Improve Voice Recognition Through Google’s Project Euphonia

Like it or not, communicating with smart devices has become a huge part of our lives. For people with disabilities, this communication can be an essential part of making it through the day. However these devices have a hard time understanding speech that is outside what they've heard before. Google has launched an effort called Project Euphonia to retrain our devices to understand people who have speech impairments. Bob MacDonald is one of the leaders of the project and he joins The Dudes to...


117 – What Does Team Gleason Have In Common with Google?

Blair Casey is the Assistant Executive Director of Team Gleason - an organization founded by former NFL player Steve Gleason. The organization is committed to providing for and finding solutions for persons living with ALS. Team Gleason’s staff and volunteers work tirelessly every day to empower those living with ALS to live with continued purpose and as productively and independently as possible. Blair joins the Dudes to talk about their work to support Google's Project Euphonia and how we...


114 Bonus – A Conversation About Debra

BONUS episode! We received a lot of comments about Episode 114 (the encounter with Debra) so we invited a few friends to join us to talk about the sometimes awkward interactions with strangers who may be uncomfortable with disability. Friends who joined us are Shandra and Christian from Florida, Leona from Colorado, and Effie Parks (host of the Once Upon a Gene Podcast) from Seattle. This bonus episode is unedited. Enjoy!


116 – What would you change about yourself if you could?

If you could change something about yourself, what would it be? In this episode, the dudes tackle this question as it relates to disability or as it relates to life in general. Listen and reach out if you have thoughts about this subject.


115 – Leading the VEDS Movement – Katie Wright

How do we get moving again after a life threatening diagnosis? Start a YouTube Channel of course! That's what Katie did. She started connecting with the Vascular Ehlers Danlos Syndrome (VEDS) community and now she leads the VEDS Movement for the The Marfan Foundation. Listen to hear her story. Find out more at And find out more about the people behind the movement at


114 – Don’t Judge a Dude by His Wheelchair

Curiosity about someone's disability often comes from a good place but depending on how it is delivered, it can create awkward or even offensive situations. This week the dudes struggle with how to react in these awkward situations. It's good for someone to ask questions but there is a line somewhere. Listen for real life stories and honest conversation. More about how we judge others in Episode 113.