We are closing out this season with a deep conversation about purpose and commitment and how we reconcile our efforts if we do not quite reach our our goals. We had fun with this one. Enjoy! This conversation was based on an article Sean wrote for Friedreich's Ataxia News: https://friedreichsataxianews.com/2019/11/05/stubbornness-determination-rehabilitation/ If you enjoy this conversation you might like: 088 - We... Read more
Kyle and Sean invent a new game with news headlines and then catch up on their 2019 goals. Also, the two dudes circle back on a conversation from a previous episode about "hidden cities" on flight itineraries.
Bumble is not specifically a disability dating website/app, but it worked for Sam and Emily. Sam lives with Friedreich's ataxia (FA) and he uses a wheelchair but they matched, connected, and the rest is history. Listen to this episode to learn their tips and experience for online dating for people with a disability.
Before we get to Dr. David Fajgenbaum, Sean shares the grim story about fracturing his hip. If you'd like details about the incident and the prognosis for the future, have a listen. Then Dr. Fajgenbaum shares his perspective on why humor is important while facing challenges in life. Listen up! Dr Fajgenbaum's Book: chasingmycure.com Two earlier episodes with Dr. David Fajgenbaum:091 - Chasing Our Cu... Read more
Dr. David Fajgenbaum has a rare disease called Castleman's Disease which put him on his deathbed 5 times as he was in medical school and earning his MBA. He repurposed a drug to treat himself and is now the world's leading researcher in Castleman's Disease. He is helping other rare disease groups by training them to use his collaborative approach to research. He also just published a book called Chasing My Cure. Please ... Read more
We presented the 2DD LIVE forum at the 2019 Global Genes RARE Patient Advocacy Summit. We laughed and cried and had an incredible time connecting with the Rare Disease Community about the patient perspective. Listen to this episode for genuine insight and hearty hilarity from our three panelists: Onno Faber, founder of RDMDTwitter: twitter.com/onnofaberInstagram: instagram.com/onnofaber Neena Nizar, founder of The Jansen&... Read more
Our Odyssey is a nonprofit organization designed to provide support for young adults living with rare and chronic diseases. Listen to learn more from the founders Seth, Kristina, and Anna. --> ourodyssey.org <--
Transitions are difficult no matter what your challenges are in life. If your challenges include a progressive neurodegenerative disease, your transitions will probably include mobility devices including walkers, travel wheelchairs, and scooters. In these transitions it is important to see these devices as tools to accomplish the things you want to get out of life.
In August, we joined team de:terminence for an off-road adventure! White Mountain is one of California's highest peaks, reaching over 14,240' in elevation. Recognized as one of the easiest 14'ers and probably the most bike-able, we called our friends at Catrike and went for a ride. Listen to find out what happened!
Kipp Wesslen was diagnosed with an unknown type of Ataxia and he has become an amazing adaptive athlete. He has learned to fight back against his disease and gain control over his life through adaptive sports. kippitmoving.com https://youtu.be/tLacel-_-BU Resources Mentioned in this episode: Challenged Athlete's Foundation: challengedathletes.org Adaptive Sports USA: disabledsportsusa.org IM Able Foundatio... Read more
Kyle and Brent Pease are amazing athletes, period. They support each other and push each other to amazing heights including an official finish at Ironman Kona, the most prestigious finish line in Ironman. Kyle happens to have Cerebral Palsy and they compete as a team. Listen to this episode to hear a shining example of living beyond circumstances. https://youtu.be/9il60ojggpA They wrote their story in a book and it... Read more
In this episode, Kyle and Sean talk about how we can stop limiting ourselves by changing our own perception of how others view us. If this sounds convoluted or confusing then have a listen, it just might make sense... We are stoked to announce that the podcast is now available on PANDORA!
Muffy Ritz completed "the world's toughest bike race" - Race Across America 3 times as a solo competitor. But that's not what she's most proud of. Listen to find out what it is.
The teenage years are some of the toughest years most of us live through. Aside from the typical peer pressures and desires to fit in, imagine facing middle and high school with a rare disease. That’s exactly what these three girls have done or are doing right now. Meet Caterina, Maya & Annie as we talk about life with a rare disease. From pay phones and boy bands, to navigating school schedules and surgeries, these thre... Read more
This podcast would have never happened if we weren't keeping each other accountable. There are many other examples in our lives where accountability is the key to follow through. Join us as we discuss this and the future of Two Disabled Dudes.
A tragic car accident left Cindy feeling guilty and depressed. Life for her family, especially her teenage daughter, Beth, was thrown into turmoil in an instant and left everyone asking, "what now?" In this episode we interview Cindy Kolbe, author of Struggling With Serendipity. Cindy tells her very personal story of pain, her struggle with depression and the hope that helped her see the beauty of life, despite tragedy. ... Read more
Kyle Attended the Professional Patient Advocates in Life Sciences (PPALS) training a few weeks ago. Immediately following, Sean joined for a screening of The Ataxian to kick off the Great Plains Rare Disease Summit. Join us for this conversation about patient involvement!
Kristin smedley was a new mother with a dream life when she found out her baby was blind due to a rare disease. Then she was dealt a second "dose of blindness" a couple years later when her second son was blind too. All the hopes and dreams she had for her life were crushed. It took several years but she learned to follow her kids' lead to navigate the world of blindness. And she learned to Set Extraordinary Exp... Read more
Elaine Baumstark and Diane Bryant join the dudes to talk about how two pains in the neck turned into two really good looking and extremely intelligent young men. Seriously, we are grateful for Moms who continue to be wise and supportive influences on our lives. Happy Mothers' Day everyone!