Two Disabled Dudes - Living with Urgency

047 – Barry Rice, Cycle Ataxia

Barry Rice is a past recipient of the Ataxian Athlete Initiative and the founder of Cycle Ataxia, a bike ride fundraiser in Ireland benefiting Friedreich's ataxia (FA). Barry joins us from his home in Ireland, where he lives with his wife and two daughters. Barry tells us about his diagnosis of Friedreich’s ataxia, the same disorder that the Dudes have. He mentions how finally discovering the name of his illness was both disheartening and a sigh of relief. After his diagnosis, he feared for ...

047 - Barry Rice, Cycle Ataxia

Ireland

046 – A Conversation With the Dudes

No guests this week; just us two dudes, and we want to get some things off of our chest. First Kyle has some gripes about hotel-accessibility. Anybody has some cheese to go with Kyle’s whine? He should get a stress ball. Kyle shouts about shampoo reachability. And towels too.   It’s easy to dismiss this aggravation as a small deal, a first-world problem. But accessibility is a fundamental issue for people with disabilities; without it, we can’t get around in the world. So even though we jo...

046 - A conversation With the Dudes

Complaints and updates.

045 – Shira Strongin, founder of Sick Chicks

Shira Strongin lives with multiple physical issues but doctors can't seem to put their fingers on them all. She has some gene mutations that make her one-in-a-million but she's been "undiagnosed" for years. She started a blog, writing under the pen name Sick Chick when she was just 11 years old. So many women and girls related to it that it has now become an international organization called Sick Chicks - a support network of strong, chronically ill and disabled young women who choose to make...

045 - sick Chick Shira Strongin

She is incredible.

044 – Francisco Sanchez – A Doctor With SCI Pays it Forward

Francisco Sanchez is a 4th year resident in a Harvard affiliated Emergency Residency program who is about to become the first person to complete residency with a spinal cord injury.  He shares his story in hopes that it will connect with others in similar situations. Francisco takes us with him on his journey from a big, 6’2 medical student, who met David Fajgenenbaum (Ep019) at a gym, because he needed a spot. After his injury, he was unable to move most of his body below his chest. In the h...

044 - Francisco Sanchez - A Doctor With SCI Paying it Forward

043 – Nic Novicki – Easterseals Disability Film Challenge

Nic Novicki is an actor, comedian and producer who has performed on six continents.  He is founder and director of the Easterseals Disability Film Challenge which gives filmmakers – with and without disabilities – the opportunity to collaborate and tell unique stories that showcase disability in its many forms and support Easterseals’ goal to change the way the world defines and views disability, so everyone can reach his or her potential. Nic Novicki photographed by Michael Lewis at the Var...

043 - Nic Noviki - Easterseals Disability Film Challenge

Nic Novicki is an actor, comedian and producer who has performed on six continents.  He is founder and director of the Easterseals Disability Film Challenge which gives filmmakers – with and without disabilities – the opportunity to collaborate and tell unique stories that showcase disability in its many forms and support Easterseals’ goal to change the way the world defines and views disability, so everyone can reach his or her potential.

042 – On Being Savage, with Les Ballard

Today we talk to a 2016 recipient of the Ataxian Athlete Initiative, Les Ballard. Hailing from a town not many people have heard of in Tennessee, Les brings a much needed southern twang to our podcast with two disabled California yuppies. Les has an unspecified version of ataxia, and rode up to his first rideATAXIA event years ago, on a trike built for a child. (Note: Les is not a child.) He recounts for us his first attempt at the 50-mile ride at the rideATAXIA, and how a missed turn sent h...

042 - On Being Savage with Les Ballard

Les is a past recipient of the Ataxian Athlete Initiative (AAI) - curefa.org/aai

041 – Spring Cleaning of the Mind

**CHECK OUT OUR NEW ONLINE STORE AT: twodisableddudes.com/shop** It's time to clean out our heads.  So in this episode we cover multiple topics including: Kyle's recent interview on the Know Ataxia Podcast (https://apple.co/2HTFWy7) Clinical Trials Goals for the year (including today's release of our NEW ONLINE STORE! twodisableddudes.com/shop) #DontForgetTheCrew (dontforgetthecrew.com) Friedreich's ataxia Awareness Day, May 19. It's a lot in only 40 min.  Enjoy!

041 - Spring Cleaning of the Mind

**CHECK OUT OUR NEW ONLINE STORE AT: twodisableddudes.com/shop** It's time to clean out our heads.  So in this episode we cover multiple topics including Kyle's recent interview on the Know Ataxia Podcast (https://apple.co/2HTFWy7), clinical trials, goals for the year (including today's release of our NEW ONLINE STORE! twodisableddudes.com/shop), #DontForgetTheCrew dontforgetthecrew.com), and Friedreich's ataxia awareness.  It's a lot in only 40 min.  Enjoy! 

040 – Breaking the Paralyzed Paradigm, with Arash Bayatmakou

Arash Bayatmakou is author of the new memoir, Little Big Steps. Arash talks to us about his sudden transition to the world of disability, after a spinal cord injury when he was 30 years old left him paralyzed. He was shocked to discover that medical treatment of spinal injuries hadn’t changed in twenty years. Rather than succumb to the paradigm that the medical field sentenced him to, Arash decided to fight for hope. He defines acceptance as the ability to cope with your life in the present m...

040 - Breaking the Paralyzed Paradigm, with Arash Bayatmakou

We are joined in this episode by Arash Bayatmakou, author of the new memoir  Little Big Steps. Arash talks to us about his sudden transition to the world of disability, after a spinal injury when he was 30 years old left him nearly paralyzed. He was shocked to discover that medical treatment of spinal injuries hadn’t changed in twenty years. Rather than succumb to the paradigm that the medical field sentenced him to, Arash decided to fight for hope. He defines acceptance as the ability to co...

039 – How to Ward Off Decrepitude with Aimee Lyons

Today we are happy to bring to you a conversation we had with Aimee Lyons, Kyle’s Crossfit coach and the owner of CrossFit King of Prussia, Pennsylvania. Aimee talks to us about the importance of functional fitness - a fitness program designed to enhance our ability. This is the root of her goal as a physical trainer, and it’s essential to those of us with physical disabilities. Maintaining our functionality is key to us living longer and healthier lives - as is the case for everyone!   Aim...

How to Ward Off Decrepitude

Aimee Lyons of CrossFit KOP

038 – Overcoming Invisible Circumstances with Ilana Jacqueline

We are excited to talk to Ilana Jacqueline - chronic disease patient, advocate and author of the new book Surviving and Thriving with an Invisible Chronic Illness. Living with invisible chronic conditions can be frustrating and overwhelming - you often have to explain “why” in the face of skepticism and doubt - and that’s in addition to managing your symptoms, treatments and therapies.   Ilana has two autoimmune diagnoses- PIDD and autonomia. If you are unfamiliar with what those are, you ...

038 - Ilana Jacqueline

Surviving & Thriving with an Invisible Chronic Illness.

037 – Rare Disease Week On Capitol Hill & The Ataxian

We are excited to bring you the recording of a live panel following the showing of the film The Ataxian, which is the movie both of us are featured in! You probably know about the movie by now- it focuses on our team's journey in Race Across America (RAAM), the world's toughest cycling event, trekking 3,000 miles from CA to MD. This movie serves as a vehicle which introduces viewers to the FA (Friedreich’s Ataxia) community.   The documentary screening was the kick-off event for Rare Disea...

037 - RDW Panel For The Ataxian

Q & A sessions following a screening of The Ataxian at RDW in Washington, DC.

036 – Patient Advocacy – Live at Reata Pharmaceuticals

We are proud to present the second half of our interviews at Reata Pharmaceuticals, this time it is all about Patient Advocacy and Patient Voice. Today is also the first day of Rare Disease Week, a US initiative sponsored by Rare Advocates, a week for those in the rare disease community to meet with our national Senators and Representatives in DC. Sean and Kyle are here in DC, along with our two behind-the-scenes dudes Jake and Matt, helping to amplify the patient voice! February is global Ra...

036 Patient engagement live at Reata

With Kara Eichelkraut

035 – Drug Development – LIVE at Reata Pharmaceuticals

We’re excited to bring you the first of two episodes about the drug development process we recorded LIVE at Reata Pharmaceuticals headquarters in Irving, TX. In this episode, we talk to Warren Huff, the founder and CEO, and Dr. Collin Meyer, Chief Medical Officer. In a behind-the-scenes look at a pharmaceutical company, we hear the background stories of both Mr. Huff and Dr. Meyer, as well as the origin of Reata. One of our guests divulges that he owns a Viper and races cars. Listen to find...

LIVE at Reata Pharmaceuticals

034 – Living for Today with Katie Stevens, President of Dyskeratosis Congenta Outreach (DCO)

When tomorrow is filled with uncertainty, we learn to make the most out of each day. Katie Stevens begins with the personal story of her son’s diagnosis with Dyskeratosis Congenita (DC), a rare genetic disorder. But she ends with a feeling of hope and confidence.   Katie is the president of Dyskeratosis Congenita Outreach: dcoutreach.org. Katie tells us about the diagnosis of her son before he was a teenager. Because genetic testing didn’t seem necessary, his DC was diagnosed as bone marr...

Katie Stevens President, Dyskeratosis Congenita Outreach (DCO)

DCO

033 – 3 Steps to use Gratitude to Bust Your Funky Attitude

If you are looking for a gratitude icon, the dudes try to play the part - they know that gratitude is a big key to living a happy and productive life.  Listen to this episode to hear Kyle and Sean's thoughts about putting gratitude in practice. Why Gratitude? Without gratitude, it’s easy for us to focus on our struggles in life. Living with a disability (or any challenge) seems like a great excuse for us to get bogged down by negativity.  We may think it's an excuse to brood over how simple t...

033 - Steps to Bust Your Funk

032 – Behind The Scenes with Jake & Matt

This episode features the other half of the 2DD Production Team. We interview Jake Tompkins & Matt LaFleur and talk about what they do and why they do it. This show wouldn't be possible without their help. We record from opposite sides of the country, causing some logistical challenges that these other guys are better at then us (mostly Sean).   Tune in to hear more about Jake and Matt and how this show comes together!

032 Behind The Scenes

Interview featuring Jake & Matt.

031 - Anniversary Episode! Listener Appreciation

We began this project a year ago, hoping to give a voice to those who choose their own attitudes in the face of challenges that life serves up. So here we are, 30+ episodes later, and the 2 Dudes have come to realize how the podcast is kept alive and strong by the group of people it brings together! In this, our one year anniversary episode, we focus on the fact that the podcast is held up by you as a listener. And you are the reason why we can’t wait to continue this next year! In this ...

031 – Anniversary Episode! Listener Appreciation

We began this project a year ago, hoping to give a voice to those who choose their own attitudes in the face of challenges that life serves up. So here we are, 30+ episodes later, and the 2 Dudes have come to realize how the podcast is kept alive and strong by the group of people it brings together! In this, our one year anniversary episode, we focus on the fact that the podcast is held up by you as a listener. And you are the reason why we can’t wait to continue this next year! In this epi...

030 – Our First Episode

Many of our listeners know that we are approaching our one year anniversary!   In two weeks we are going to feature an episode that includes a few of our loyal listeners plus Jake and Matt, the two behind-th-scenes Dudes that make this show possible.   While we are busy preparing the anniversary episode we are bringing you one of our most listened-to episodes - the very first one, from December 12, 2016.  Enjoy!

030 - 000 Rerun

One of our past favorites as we prepare the 1yr anniversary episode!

029 – Wonderful and Different with Paul Avery

“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 Friedreich's ataxia (FA); and chair of the board of the Friedreich's Ataxia Research Alliance (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 sudden and unexpected change: but not a shi...

029 - Wonderful and Different with Paul Avery

“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 sudden and unexpected change: but not a shift Paul hesitated to make. For him, his love for a...

028 – Self-Discipline Update

We're bringing you a follow-up episode detailing our progress to the challenges we gave each other in a previous episode (026). We are working towards greater self-discipline! Inspired by our conversation with Drew Dudley (025) and the book Living With A Seal by Jesse Itzler, we issued a few challenges to each other and this episode brings an update to our personal performance. The first challenge we talk about is our 100-pushups-per-day challenge. The 2DD Pushup-up challenge started strong,...

028 2DD Challenge Check-in

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

027 – Live Patient Panel

Living with any condition presents challenges for everyone, some common and some unique. No matter our circumstances though, life is what we choose to make it. We are all dealt some cards and everyone chooses how to play the hand they're dealt. In this episode, we talk with a panel of three friends living with Friedreichs Ataxia. Jean, Kate and Michael talk openly in front of a live audience about life with FA. From adapting to high school to playing in the dirt 30 years after a prognosis tha...

Episode 027

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.

026 – Self Discipline

In this episode, we get back to the basics. No guest, just 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 that’s not who you are. The key to unlocking your own greatness is self-discipline.   Sean ha...

026 - Self Discipline

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 that’s not who you are. The key to unlocking your own greatness is self-discipline. Sean ...

025 – Leadership with Drew Dudley

Almost anyone with a disability can tell you that we are often thrust into the spotlight, even though we never asked for that. People with disabilities are too often seen as “brave” or “strong” or “inspiring,” when in reality we are just living. This is in no way to diminish the struggles of “just living” while overcoming a disability: believe me, we understand that hardship. But to be called “heroic” or “inspiring” just because we have a disability is cheap. It feels like it dismisses us. ...

025 - Leadership with Drew Dudley

024 – Rare Disease Parent Perspective with Tom Hamilton

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 Foundation. It’s understandable that most of what we focus on in this podcast is meant to encourag...

024 - The Parent Perspective with Tom Hamilton

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 Foundation.

023 – How The Challenged Athletes Foundation is Changing Lives

Patrick Lawrence is the Senior Programs Manager for the Challenged Athletes Foundation (CAF) and he joins us to talk about CAF and specifically their grant program in order to empower the athlete in all of us! One of the ways we manage life with a disability is to stay as active as we can.  But staying active when you have a disability looks a lot different than it does for able-bodied people. Whether traveling to an accessible location, finding equipment that we can use, or locating a coach...

023 Patrick Lawrence & CAF