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. Their 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.
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: cystinosis.org
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: https://friedreichsataxianews.com/2020/09/29/connecting-others-helps-us-move-forward/
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: https://www.truehelp.com/
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 rideataxia.org/globalchallenge or join Team #CrankinWithKyle HERE.Join us on Strava to contribute to the goal of traveling around the globe!Cycling - https://www.strava.com/clubs/710903Running - https://www.strava.com/clubs/617708Any other activity via the activity log - https://rideataxia.org/files/GC-Activity-Log.pdf
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 Coordinator in 2016. Kevin currently serves as the Director of Communications & Patient Engagement (since Oct. 2019). He has facilitated the Teen Program at ASF Family Meetings, represented ASF at patient advocacy events and conferences, and co-moderates the ASF Facebook Support Group Page. In his free time, Kevin loves playing guitar, attending concerts, and collecting/voraciously reading books.
Website: alportsyndrome.orgSocials: https://www.facebook.com/alportsyndromefoundation/
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.
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Educational, Funny and great conversations
Worth listening, you won’t he disappointed and you might even learn a thing or two