Two Disabled Dudes Podcast

A brief summary of this episode

A brief summary of this episode

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 be better human beings.

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 Community.

A brief summary of this episode

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!

A brief summary of this episode

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 each of these guys joined the team, how they managed to get through some difficult scenarios while on the race, a few favorite memories, and hear about some embarrassing moments you are welcome to make fun of! 

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 awkward and clumsy; but all people with disabilities face some kind of uncommon limitation, whether its using our arms or leg, trouble hearing, speaking, or seeing, facing mental issues or any other symptom of a disability. The unfortunate result is that many of us with disabilities feel odd. However, the truth is that people dealing with disabilities are not alone. It’s important for everyone - disabled or not - to be a part of a community, but it’s even more important for people who feel isolated to find support and understanding from those facing similar challenges as them.

“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 joins us for a conversation about how community is essential for all of us no matter what disability we have. “[Being disabled] is an exclusive club that no one joins on purpose...the parking is a right, not a privilege.” Matt gives a few tips about navigating life with a disability. One of his most fundamental points is that we cannot do it on our own; that even though doctors, nurses, therapists, and surgeons gave him the same advice, he didn’t pay much attention to what they said, until it was told to him by someone within th

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 his son Keith’s diagnosis with Friedreich’s ataxia at nine-years-old. A counselor who noticed Keith’s problems with balance and coordination recommended that Keith go to a neurologist for a check-up. At that appointment few months later, Ron and his wife Raychel were told that Keith had Friedreich’s ataxia (FA), a condition they’d never heard of and couldn’t even spell. When they asked what they could do about this diagnosis, the neurologist gave a grim answer - nothing. To Ron and Raychel that was not an acceptable answer so

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 prohibitive for someone with a disability. Since 2009, the Ataxian Athlete Initiative has provided 32 individuals with adaptive cycling equipment. The application for 2017 is available now until May 1; any person with ataxia can apply by clicking “Apply for an AAI Grant” at curefa.org/aai, giving information on the applicant and what kind of equipment would work for them. Please remember that this is a competitive application process and funds are limited. Some tips to consider when applying to the AAI: Try out various adaptive e

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 dreamed of being able to know enough about global superpowers that he would be able to help orchestrate peace between the US and the Soviet Union. After an impressive military career, he was a part of the INF Treaty, which helped put an end to the Cold War. Shortly after that treaty was signed, Ron’s son was diagnosed with the rare disorder Friedreich’s ataxia (FA). Suddenly the world of the rare disease community opened up to him, and he decided to use his ample peacemaking skills in the fight against FA.

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 to treatments or cures. Max is a scientist at heart; he has been published in Nature and The New England Journal of Medicine which makes him a great ally in raising awareness of rare diseases. He uses his background in his job at The Everylife Foundation in two big ways. One way that he uses his science background is what he calls regulatory issues. He does this by continuously holding meetings with large health and biotech and pharma partners. He speaks directly to the doctors and scientists at the forefront of cutting edge research in health and medicine and reminds them of the reality of rare diseases, a field of

Nicole Boice