Two Disabled Dudes
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 soon!
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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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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 . Listen to this episode to get insight on the value of connecting to others.
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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 provides consultation to health care & rare disease organizations,...
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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 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.
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Finding the strength to keep moving after a heart wrenching loss is a prime example of living life beyond circumstances. Chris Doveton 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 stiff upper lip. He must learn to open his heart and cry. Saved from the depths of misery by life-saving therapy, he discovers a life beyond...
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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.
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Cystinosis is a rare disease that causes life altering damage to the kidneys, eyes, muscles, pancreas, and brain. Clint Moore's son, Chandler liver 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. Visit the Cystinosis Research Network: Watch the Documentary:
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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 try to break down this complex topic. They probably need some professional help... This topic all started with a little column Sean wrote:
info_outlineSometimes frustrations get the better of us. And in quarantine, we are all on edge a little more than usual. In this episode, the dudes put their focused conversation aside for a bit to vent a few frustrations and ramble aimlessly. Enjoy :-)