Two Disabled Dudes - Living with Urgency

023 - Challenged Athletes Foundation

022 – The Psychology of Disability with Dr. Dan Gottlieb

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. Our focus this episode is on the often overlooked interior life of those affected with disabilities. We interview Dr. Dan Gottlieb, renowned professional ...

023 - The Psychology of Disability with Dr. Dan Gotlieb

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 and he joins us to talk about how disability has touched his life and how we can all work to ...

021 – rideATAXIA Europe, Le Peloton de l’Espoir

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. [easy-image-collage id=559]

021 - rideATAXIA Europe, Le Peloton de l'Espoir

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.

020 – LIVE at Horizon Pharma

Join us for a discussion about patient engagement in rare diseases with Horizon Pharma.  This is our first recording in front of a live audience!

020 - LIVE at Horizon Pharma

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

019 – Dr. David Fajgenenbaum – Conquering Castleman Disease

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 Community. How does anyone keep going, when your body is your own worst enemy?   For David, the an...

019 – Dr. David Fajgenbaum – Conquering Castleman Disease

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 Community. How does anyone keep going, when your body is your own worst enemy?   For David, the an...

019 - Dr. David Fajgenbaum - Conquering Castleman Disease

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 Community.

018 – Breaking Your Chains with Rudy Garcia-Tolson

  Sometimes being brave is what gets us through. Facing the unknown and facing unknown possibilities down the line is familiar to any of us living with a disability.   Maybe no one understands that better than Rudy Garcia-Tolson, who made the decision to have both of his legs amputated above the knee when he was only five years old. Born with legs that weren’t able to support him and allow him to function properly, Rudy wanted more than anything to be as active as his brothers and sisters...

018 - Breaking Your Chains w/ Rudy Garcia-Tolson

017 – Disability Does Not Mean Inability with Roger Crawford

Sports Illustrated recognized Roger Crawford as "one of the most accomplished physically challenged athletes in the world."  As a Hall of Fame speaker and best-selling author Roger teaches us how attitude affects outcomes. Viktor E. Frankl, a Jewish psychiatrist who was forced into a Nazi concentration camp during World War II, wrote many profound  statements on the ability to choose one’s own attitude, even in the harshest situations: “When we are no longer able to change a situation, we ar...

017 -Roger Crawford

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

Kyle on The Lo-Down KHTK Sports 1140

Leading up to rideATAXIA's 8th annual NorCal ride, Kyle was interviewed on a popular local Sacramento show! Hosted by Damien Barling & Jason Ross, Kyle had the opportunity to talk about the ride, The Ataxian, explain Friedreichs Ataxia and even plugged this podcast! In this special cast, we share that live interview with you. Enjoy! For more info on rideATAXIA NorCal, click here!

KHTK Interview

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!

016 – Nutrition and Choices with Dr. Liz Applegate

In this episode we sit down with Dr. Liz Applegate, a nationally-renowned expert on all things related to nutrition. She speaks about her teaching career and a current program that strengthens people’s sharp-mindedness, among other exciting projects she’s working on. One thing we know all too well in navigating our lives with disability is to treasure what we can do for ourselves. Maybe it has to do with the American ideal, maybe it has to do with remaining as active as we can, but it’s prob...

016 - Nutrition with Dr. Liz Applegate

015 – Race Across America – Perspective from John and Mike

You've heard us talk about our 4-man Team, and 13-member Crew in Race Across America (RAAM). In this episode, we chat with the other two cyclists from Team FARA in 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 families of their own.   In this episode we discuss our memories fr...

Race Across America - Team FARA

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 families of their own.  In this episode you'll enjoy feedback and personal perspectives on why ea...

014 – RAAM Crew Chief Mike Bryant (Kyle’s Dad)

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. Held hostage by a cat. Hear the story on a new episode out tomorrow! Plus we interview Kyle's Dad about being crew chief for Race Across America. A post shared by Two Disabled Dudes Podcast (@2ddpodcast) on May 7, 2017 at 12:52pm PDT We never know what w...

RAAM Crew Chief Mike Bryant (Kyle's Dad)

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.

013 – Our #1 Advice: Build Community

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 awkward and clumsy; but all people with disabilities face some kind of uncommon limitation, whether i...

013 - Kyle & Sean's #1 Advice

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 awkward and clumsy; but all people with disabilities face some kind of uncommon limitation, whethe...

012 – Matt Fritsch – The Spinal Cord Injury (SCI) Community

  “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. One of those friends is Matt Fritsch. Matt has a spinal cord injury and in this episode he jo...

012 - Matt Fritsch - The Spinal Cord Injury (SCI) Community

“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.  One of those friends is Matt Fritsch.  Matt has a spinal cord injury and in this episode he join...

011 – Ron Bartek Part 2 – Collaboration

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 when deprived of normal physical needs like sleep and food. Ron shares about the experience of hi...

011 - Ron Bartek Part 2 - Collaboration: We're All In This Together

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 when deprived of normal physical needs like sleep and food. Ron shares about the experience of ...

010 -Adaptive Equipment Grants – Ataxian Athlete Initiative

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 specifically for people with FA, to purchase adaptive cycling equipment, which is often times cost prohibiti...

010 - Adaptive Equipment Grants - The Ataxian Athlete Initiative

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 specifically for people with FA, to purchase adaptive cycling equipment, which is often times cost prohibit...

009 – Ron Bartek, Co-Founder and President, Friedreich’s Ataxia Research Alliance (FARA)

We are honored to interview Ron Bartek, president and co-founder of the Friedreich’s Ataxia Research Alliance (FARA). Since both of us have Friedreich's ataxia (FA), this organization and Ron himself are special to us. Note: This episode has some audio imperfections. We still chose to release it, going against the advice of our audio producer. (You’re awesome, Jake.) So we give you the first half of our interview with Ron Bartek. The audio problems are slight, and sound like Kyle banging tog...

009 - Ron Bartek, Co-Founder and President, FARA

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 Nuclear Forces (INF) Treaty between The United States and The Soviet Union. As a school kid, Ron...

008 – Paul Melmeyer, Associate Director of Public Policy, NORD

"Alone we are rare. Together we are strong." -National Organization for Rare Disorders In this episode we are joined by Paul Melmeyer, Associate Director of Policy at the National Organization for Rare Disorders (NORD). Among other things, Paul is the main lobbyist of NORD and visits Capitol Hill often, frequently meeting with the FDA, Medicaid, Medicare, and other federal services that impact those affected with rare diseases. NORD’s goal is to be a one-stop shop, offering aid to those faci...

008 - Paul Melmeyer of the National Organization for Rare Disorders

Interview with NORD

007 – Interview with Max Bronstein of the EveryLife Foundation

  "We have a big innovation gap in this country when it comes to rare disease therapies. 7,000 diseases and only roughly 300 treatments on the market for those diseases. We have a long way to go and there's a lot of work that needs to be done if we ever want to get to the point where we have one treatment for all of those diseases or even multiple treatments - and that is what our foundation is set up and designed to do." For our second interview before Rare Disease Day (Feb 28), we chat wi...

007 - Max Bronstein

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 to treatments or cures. Max is a scientist at heart; he has been published in Nature and The ...

006 - Nicole Boice

Nicole Boice

006 – Nicole Boice, CEO Global Genes

  The knowledge and diagnosis of a rare disease can be a frightening time in anyone’s life. However, through education and through connecting to others, support - and hope - is abundant.   “When I started looking at the stats and facts about Rare Disease...that was my catalyst to say, ‘This is the largest disease community on the planet, more than all cancers and AIDS combined, 30 million people here in the US, 350 million people worldwide.’ My big question marks were, ‘Why in the heck isn...

005 – Rare Disease Day Special Guests

In the rare disease community, strength is in unity and supporting one another. Image courtesy of debra February 28th is globally recognized as Rare Disease Day. Since Friedreich’s ataxia (FA), the disease shared by us Dudes, is considered a rare disease, five episodes will come out in February, instead of one episode every other week, as normal.   In this episode we talk about what is meant by “rare diseases” and how rare they really are. This episode contains snippets of three intervie...

005 - Focus on Rare Disease Day with Special Guests: Nicole Boice, Max Bronstein, and Paul Melmeyer

In the rare disease community, strength is in unity and supporting one another. February 28th is globally recognized as Rare Disease Day. Since Friedreich’s ataxia, the disease shared by us  Dudes, is considered a rare disease, five episodes will come out in February, instead of one episode every other week, as normal. We explain what is meant by “rare diseases” and how rare they really are. This episode contains snippets of three interviews that will be released in their entirety later in...

004 – Travel Gone Wild – How to conquer anxiety during travel with a disability.

There is a lot of anxiety that comes along with travel, especially when also factoring a disability into the situation. There a few important things that help us battle that anxiety including a strong game plan informed by the experiences of others, and the emotional flexibility to roll with challenges and continue to move forward. In this episode, Kyle and Sean share insights from listener feedback and personal stories of their travels. In this episode, Kyle tells a story about hailing a ca...

004 – Travel Gone Wild – How to conquer apprehension during travel with a disability.

There is a lot of apprehension that comes along with travel, especially when also factoring a disability into the situation. There a few important things that help us battle that apprehension including a strong game plan informed by the experiences of others, and the emotional flexibility to roll with challenges and continue to move forward. In this episode, Kyle and Sean share insights from listener feedback and personal stories of their travels.

003 – Travel and Mobility

Travel is freedom.  On the surface disability seems to limit that freedom.  But it’s not limited, just different. However you need the right mindset to overcome obstacles.  Join us as we share a conversation about what informs our approach to travel. As a follow up to this episode, the next one will feature reactions and stories from our listeners plus our own stories of horror and hilarity from our travel experiences.  Please leave your comment below and we will feature some listener feedba...

003 - Travel and Mobility

Travel is freedom.  On the surface disability seems to limit that freedom.  But it’s not limited, just different. But you need the right mindset to overcome obstacles.  Join us as we share a conversation about what informs our approach to travel.

002 – Self Image

What is self image and why is it important?  Join us as we discuss self image and things we can think about to help promote a healthy one. A couple of videos that Sean referred to in this episode: https://youtu.be/7XFLTDQ4JMk https://youtu.be/VaRO5-V1uK0

002 - Self Image

What is self image and why is it important?  Join us as we discuss self image and things we can think about to help promote a healthy one.

001 – Life Is About How We React

First of all, thank you for all the kind and encouraging feedback over the past week.  Keep it coming!  The best way to help the podcast is to visit us on iTunes, and/or Google Play, and/or Stitcher, subscribe, and leave a review - it will help other awesome dudes and dudettes find the show.  Thank you! - The Dudes Life happens and many things are out of our control.  What is in our control is how we react to those situations.  Our reactions often define the outcome of a situation - good, ba...

001 - Life Is About How We React

Life happens and many things are out of our control.  What is in our control is how we react to those situations.  Our reactions often define the outcome of a situation - good, bad, and anywhere in between.  In this episode we talk about our reactions to challenging circumstances.  We also give a few examples of people that have had a positive and productive reaction to challenging circumstances.

000 – Welcome to the Two Disabled Dudes Podcast!

Welcome to the Two Disabled Dudes Podcast! In this episode Kyle Bryant and Sean Baumstark talk about becoming friends, creating the podcast and their connection through the diagnosis of Friedreich's ataxia (FA). Sean reached out to Kyle shortly after he was diagnosed with the intent to dream big, execute like mad, and connect to others along the way. What started as a meeting over beer and pizza has developed into a partnership poised to take over the world! :-) In 2010, Sean and Kyle partic...

000 - Welcome to the Two Disabled Dudes Podcast

Welcome to the show!  In this episode Kyle and Sean talk about creating the podcast and their connection through the diagnosis of Friedreich's ataxia (FA).  The focus is on the empowerment they get by connecting to the FA community, the Rare Disease Community, and anyone with similar experiences.