Two Disabled Dudes

“It’s a wonderful life; it’s just a different life.” We interview Paul Avery, CEO of World of Beer; former COO of the parent company of Outback Steakhouse, father of two daughters diagnosed with FA; and a member of the board of directors at FARA. The transition from being in the business of running successful restaurants to becoming forefront in the research and treatment of a rare disease was a s...

Kyle & Sean's progress on their 30-day challenges.

This Episode features Kyle & Sean facilitating a panel of three others living with FA, Kate (14), Michael (17) and Jean (54). This live recording took place in Tampa, Florida in September 2017, leading up to the FARA Energy Ball.

In this episode, we get back to the basics. No guest, just the 2 Dudes hanging out and talking about a topic very important to us: self-discipline. Living with a disability is often frustrating. Maybe that’s an understatement. When so many normal daily activities are impossible, or at least difficult, to do independently, we are tempted to develop a victim’s mindset. But that’s not who we are, and...

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Tom Hamilton spent 25 years on Wall Street and when his daughter was diagnosed with Friedreich's ataxia (FA), he started using all his knowledge and expertise to fight Rare Disease.  Tom is on the Board of Directors for the Friedreich's Ataxia Research Alliance (FARA), he is a founding Board Member for Chondrial Therapeutics, he is Executive Producer of The Ataxian , and co-founder of the CureFA F...

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Dan Gottlieb is a practicing psychologist and therapist with more than 40 years of experience. Best known as the host of "Voices in the Family," a weekly radio program heard for more than 30 years on WHYY-FM, Philadelphia’s NPR affiliate. Dan recently retired from the weekly radio program, and now produces and hosts six specials each year. Dr. Gotlieb suffered a spinal cord injury at the age of 33...

rideATAXIA Europe - Le Peloton de l'Espoir was a 450 mile ride from Strasbourg, France to Lyon, France during July 1-8, 2017.  There were 20 riders from the US and 30 riders from France. The purpose of the ride was to bring together the French and US FA communities as one united FA community, moving to the finish line together.  Join us as Sean "interviews" Kyle about the ride.

Join us for a discussion about rare disease patient engagement recorded LIVE at Horizon Pharma.

In college, his friends called him The Beast . But then he got mysteriously sick and was on the brink of death 5 different times, stumping specialists.  Diagnosed with Castleman Disease, Dr David Fajgenbaum earned his MD and started research on himself.  He formed the Castleman Disease Collaborative Network (CDCN) to speed the progress toward a cure for himself and the entire Castleman Disease Com...

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Sports Illustrated calls Roger Crawford one of the most accomplished physically challenged athletes in the world.

Leading up to the 8th Annual Ride Ataxia NorCal (2017), Kyle Bryant was interviewed on KHTK Sports 1140 to promote the bike ride, The Ataxian and spread awareness of Friedreichs Ataxia!

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You've heard us talk about our 4-man Team, and 13-member Crew. In this episode, we chat with the other two cyclists from TeamFARA RAAM; John Lockwood and Mike Mellott. John & Mike have both been involved and supportive of many adventures throughout the years and they are always fun to reconnect with. As you'll hear, since competing in RAAM 2010, both of these dudes have married and started familie...

We never know what we are truly capable of until we find ourselves in a tough situation, when success is the only option. Kyle's Dad, Mike Bryant joins us to talk about Team FARA in Race Across America and what it took to get the team safely across the country in "The World's Toughest Bike Race." And Kyle tells a short story about being held hostage by a cat.

In this episode, Kyle & Sean talk about how building community has helped them and how it could help YOU. “No man is an island…,” as John Donne reminds us. Growing up with a rare disease is, almost by definition, lonely. Faced with physical limitations that most of our neighbors don’t have to face many times makes us feel odd. With ataxia, we go through issues with balance that make us seem awkwar...

“To hear from and learn from people who are in the same position...there’s nothing that compares to it.” A lot of our focus lately has been of Friedreich’s ataxia or FA - the disease that both of us share. And that shouldn’t be a big surprise. FA has had a huge impact on us - it has forced us to see life in a different way and adapt. We have each had friends that have helped shape that impact.  On...

As promised, here is the second half of our interview with Ron Bartek, president and cofounder of the Friedreich’s Ataxia Research Alliance, or FARA . Please note that the audio quality is less than ideal, but still definitely enjoyable. Along with Ron’s very impressive resume, we found out that he learned to sleep standing up in Army Ranger School. Ron discovered much of what the body could do wh...

The idea for the Ataxian Athlete Initiative (AAI) adaptive cycling equipment grant program came when Kyle received a grant from the Challenged Athletes Foundation , which he used to purchase a Catrike recumbent trike. That purchase changed his life: while on it, he didn’t feel as physically limited as he felt most times. Realizing how impactful that grant was for him, he created a grant specifical...

We are honored to interview Ron Bartek, president and co-founder of the Friedreich’s Ataxia Research Alliance, or FARA. Since both of us have FA, this organization and Ron himself are special to us. In a word, Ron is a peacemaker. Kyle starts off by reading Ron’s long and impressive bio.. Of special note to Ron is that he was able to be a part of the negotiation team for the Intermediate-Range Nuc...

Interview with NORD

For our second interview before Rare Disease Day (Feb 28), we chat with Max Bronstein, Chief Advocacy and Science Policy Officer at The Everylife Foundation for Rare Diseases. The goal of the Foundation is to help advance innovation in the rare disease community; to advance knowledge and methods of support for those with a rare disease, and to ultimately look towards developing and enabling access...