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.
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.
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.
“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.
- Recommended!June 8, 2021 by Courtney1234123 from Canada
Down to earth, inspiring, educational , love the different conversations and perspectives!
- Rock StarsFebruary 17, 2021 by ok.colleen from United States
Kyle and Sean are rock stars in my book. I love listening to their conversations and it seems I always learn something profound to take away. A good listen! Thanks! Colleen
- Fun and Easy ListeningDecember 12, 2020 by April1984 from Australia
As a person with a rare disease I can relate to so much of what the hosts share each podcast with humour and honesty. I love how each time it’s interesting listening and I always feel motivated to keep going each day. Thanks!
- Listen to these Dudes!October 8, 2020 by tomba b from United States
Entertaining, smart, funny , provocative and personal. Keep cranking all the way to a cure!
- Love this podcast!!!October 6, 2020 by chelle0087 from United States
Love this podcast!!!
- Kyle and Sean are amazing!October 6, 2020 by Dietbetfan from United States
You won’t find a more inspiring couple dudes! They are so kind, fun, smart, and are genuinely fighting for their lives... which is such a huge reminder for all of us to cherish every moment. Thank you for your continued HOPE and we love you guys!
- Fun, informative, inspirational!October 6, 2020 by glasshalffull! from United States
Kyle and Sean have it all. Their Two Disabled Dudes podcast carries you away in an entertaining yet informative conversation about ataxia, rare disease, perseverance and more! Be inspired, have a laugh, get to know two really great guys!
- Fantastic PodcastOctober 5, 2020 by App review 3962 from United States
Sean and Kyle do a superb job of talking about all sorts of issues they face living with a disability. They also have a lot of interesting guests on the show which make every week worth a listen. Would highly recommend this podcast for anyone with a disability or just facing tough times!
- A top favorite podcastOctober 5, 2020 by Blondiekkd from United States
As a fellow rare disease patient advocate I can never thank Kyle & Sean enough for their entertaining advocacy. I’ve learned so much from listening to the Two Disabled Dudes Podcast. As a mother to a 9yo in a wheelchair, I’m grateful for this knowledge and how they’ve opened my eyes to challenges before us that we can crush. Carry on Kyle & Sean. I look forward to listening to forthcoming episodes. Gratitude.
- Something to smile aboutOctober 5, 2020 by Justin31Dobr from United States
If you are looking for a podcast to brighten your day, and to show you how to let difficulties in life roll off of your back, this is the podcast for you. These two young men have taken lemons, and turned them into a Cadillac margarita. They have learned through trial and error how to navigate a world with major hurdles. Their humility, and vulnerability is inspirational. And they’re funny too. I can’t recommend this podcast enough.
- InspiringOctober 5, 2020 by Spanisheyes45 from United States
Kyle and Sean are so inspiring with how they deal with having FA. They have done so much for the community and do all they can to spread information on this rare disease and what it’s like to live with it dat to day. The podcast is just another great thing they are doing that is also great to listen to whether you have FA or not.
- Educational, Funny and great conversationsOctober 5, 2020 by JAYS-R from Canada
Worth listening, you won’t he disappointed and you might even learn a thing or two
- My favorite podcastOctober 5, 2020 by DebbieDoesDC from United States
This is a great podcast. Entertaining, hilarious... but also deeply meaningful and uplifting. I love these guys.
- Easy listen!October 5, 2020 by Joeytyler2017 from United States
- Such an encouragement!October 5, 2020 by BradGriffith from United States
Love this podcast between 2 of our FA heroes! Funny and encouraging. Thanks for sharing your stories, guys, and introducing us to amazing people and helpful resources.
- Thank you for being FA WarriorsOctober 5, 2020 by Micaldunc from United States
A family member has FA. It’s good to hear what two people are doing with their diagnosis-and sitting still is not it! Thank you Kyle and Shawn. Thank you for your perspective and work in driving research for a cure.
- So encouragingDecember 3, 2019 by Fred Smother from United States
My son was diagnosed with FA last year. We’ll often put on the podcast and just listen around the house on the wknd or in the evenings. Every time we listen to an episode it is a huge encouragement to keep pressing ahead.
- Terrific podcast, not to be missedOctober 17, 2019 by bikers unite 12345 from United States
Helped me to connect to a pal with a disability, a reminder that we ALL have obstacles to overcome, very motivational, thanks for the frank discussions, love this podcast, Sean and Kyle are hilarious and shine a positive light on tough subjects
- Good source of information for folks with ataxia!October 8, 2019 by Wme1221 from United States
Enjoy the podcast--
- Impactful and funny!October 7, 2019 by ptomkz from United States
I highly recommend this podcast. Kyle and Sean are an incredible duo. They dive into all sorts of topics with some pretty cool guests. Funny, emotional, educational. Definitely worth your time.
- Two Great DudesOctober 3, 2019 by chdude from United States
Kyle and Sean are so authentic and positive. I've met Kyle while riding my trike in Winters, California. Hopefully I will meet Sean soon. They both remind me to get out of my comfort zone.
- My DudesOctober 2, 2019 by Mary Nadon Scott from United States
I love you both so much! Thank you for making me laugh, motivating me, and simply making my life better. I could never fully express my gratitude for you both, and this podcast, but I feel absolutely blessed to call you dear friends and FAmily. Thank you for inspiring me to push beyond my comfort zone. That’s truly where the magic happens. Thank you for bringing the magic into my life. PS. Sorry Sean, but the East Coast is the best coast.
- One...er...Two of the BestSeptember 25, 2019 by KevinFreiert from United States
This is my favorite podcast. Kyle and Sean bring humor, insights, and honesty to the discussion about living with challenges. Each episode helps me understand more about the resilience and strength of people.
- This podcast rocksSeptember 24, 2019 by German sheherd mo from United States
The Two Disabled Dudes podcast has helped me to rethink my life entirely. I went from “my life is one long road to falling apart” to my situation is a challenge I can embrace. I will be a die-hard fan for life.
- Episode 83September 4, 2019 by yoursalf from United States
Great discussion. Get out of your comfort zone. Your community, friends and family are your safety net when you reach your limit.
- Love this podcast! Check it out!June 4, 2019 by Cindy Kolbe from United States
Kyle and Sean are interesting people, as well as the perfect hosts. With this podcast, you can expect amazing guests and meaningful conversations!
- I love it!!January 31, 2019 by snheim from United States
Just binged listened to the whole thing!
- Two Inspiring dudes!January 27, 2019 by beckysbuys from United States
Listening to Kyle and Sean whether on their podcast or in person is always inspirational. These men have shown us how to do more with less, in other words they’ve done more than these two non disabled bodies! In their goal reviling episode Sean reminded us how to be “measurable” and accountable! Thanks for your words and encouragement!
- Five star podcastDecember 23, 2018 by lacativo52 from United States
I love this podcast! It is funny, interesting, informative and timely. Kyle and Sean put the right amount of silliness and fun into each episode. The wide range of guests keeps the conversation interesting. Give this podcast your ear.
- 2 disabled dudes podcastsDecember 5, 2018 by sherellef from Australia
Whatever challenges are faced in life, Kyle and Sean discuss them with honesty, humility and humour. Two truly remarkable dudes!
- These Dudes Make My Day!November 21, 2018 by jo-jo-mo from United States
Their positive outlook and approach to their obstacles gives me the strength and encouragement to tackle my own obstacles in life. Thank you, guys!
- Awesome PodcastOctober 10, 2018 by StormedTheDesert from United States
This podcast gives a great perspective on FA! It’s great!
- Relatable and hilariousOctober 6, 2018 by Sammysue896453 from Australia
Having FA too, I can relate so much to all these stories which makes me not feel so alone. At the same time it makes me laugh.
- Humor & GraceOctober 6, 2018 by Eggerator from United States
Kyle & Sean interview some amazing people. Each time they are well prepared and are thinking on their feet with insightful questions. What makes each podcast truly great is their friendship & banter with each other. They openly share their stories and perspectives with humor and grace . They offer optimism and aren’t afraid to poke fun at themselves. Each podcast feels like it’s 5 minutes, but each 45 minutes or so provides insight and inspiration.
- Love this podcast!October 6, 2018 by kaceymarie3 from United States
Very informative, encouraging, and inspiring! Kyle and Sean do an excellent job and this podcast is really enjoyable to listen to. I highly recommend it!
- Real people, real lives, real relatableOctober 5, 2018 by khuck14 from United States
As a parent of a disabled child, I find the podcast both informative and uplifting. Kyle and Sean remind me in every episode that a disability diagnosis doesn’t mean the end of the world. They are living such awesome and meaningful lives and, let’s be honest, probably having way more fun than the rest of us. They crack me up! They are so much fun to listen to and the variety of guests is great. Even if you are not disabled or connected to the disabled community in any way, you will relate to the perspectives they reveal while sharing about the unique challenges they and others with disabilities face. We’re all overcoming something and these guys do it with grace and a wicked sense of humor.
- You dudes rock!October 5, 2018 by Liz Gehr from United States
Keep up the great work! It’s a pleasure to spend time with you, virtually & otherwise.
- FantasticOctober 5, 2018 by MattthewF from United States
A podcast with just Kyle and Sean would be reason enough to subscribe, but the guests they bring in are awesome. Great, inspiring and very funny podcast regardless of your situation. Kids also get a lot out of it.
- FAntastic podcast!October 5, 2018 by Team desTroy from Australia
Serious conversations from people looking for a cure for FA hosted by two of the most inspiring guys, Kyle & Sean with some cracker stories that will be sure to make you laugh! Totally recommend this podcast!
- InspiringSeptember 14, 2018 by darrensmyth from Australia
These gents make me laugh and cry with their honest conversations. Truely inspirational, motivating and confronting in a good way... keep up the great work and look after yourselves
- Thank You, Dudes!September 13, 2018 by Erika at Miracle Flights from United States
Thank you, Sean and Kyle, for inviting Levi Krystosek and Mark Brown from Miracle Flights to be on the show (episode 049). It was so much fun---a fantastic experience for them and a tremendous honor and privilege for our entire organization to be a part of the incredible work you do!
- Worth every minuteMay 23, 2018 by rolfhill from United States
Two of my three girls have FA and this is what led me to this podcast. Sean and Kyle have a fun way of discussing many aspects of living with FA or other disabilities. I look forward to every episode and am So thankful that they are raising awareness. Keep up the great work Sean, Kyle, Jake and all those involved!
- Two Funny DudesMarch 17, 2018 by T | A | H from United States
Kyle and Sean are authentic and unique guys who inspiring and hysterical...! They sound a little drunk, but they’re not - in fact the insights and stories provide a lucid and entertaining look into the world of living with Friedreichs Ataxia. These guys raced their bikes across the United States in 9 days...check out their doc The Ataxian...subscribe and have a few laughs while gaining understanding of the power of humanity.
- Informative and inspiringMarch 13, 2018 by ojasvi chaudhary from United States
I have had the good fortune to meet Kyle when he visited RaNA therapeutics in 2014 summer. He inspired me than and now his podcast continues to do it. At the same time it is fun listening to their experiences in day to day life.
- Inspiring discussion on many levelsFebruary 6, 2018 by Deliberate Living from United States
Listening to this podcast I am constantly reminded not to take ANYTHING for granted. These guys are hilarious and genuine. They let it all hang out. Good, bad, and ugly. It’s all life, and it all matters. Great podcast. Would love to hear and see more from these guys.
- Always An Inspiring MessageNovember 26, 2017 by TtotheBone123 from United States
These guys are great! The podcast is so much more than simply a show about disability. Their humorous and enlightening outlook on life, and living with urgency, is sure to resonate with many people. Their discussions speak to our common humanity and the implications of the decisions we make. Their messages are always thought-provoking and inspiring.
- AmazingOctober 7, 2017 by sarahbrownemusic from United States
Kyle Bryant & Sean Bamstark are two wonderful human beings. Thank you for doing what you do <3
- Ms.October 6, 2017 by Marcy Freed from United States
I enjoy the voice Sean and Kyle give to disability. They are athletes, two regular dudes and two exceptional men. The Podcast os work listening to and sharing.
- Authentic dudesOctober 6, 2017 by ToddyP from United States
The Two Diabled Dudes' conversational dialog is sincere and that's what makes this show special. Two amazing guys living with a rare disease but overcoming with analysis and humor. The subjects are diverse and their is literaly something for everyone… inspiration, knowledge, laughs and friendship. Thoughtful and practical, give Two Diabled Dudes and you'll be a fan too.
- Helpful and encouragingOctober 6, 2017 by DGraczyk from United States
Great guests and relevant conversation whether you have a disability, care for someone with a disability, work on health care, or just need a little encouragement. Kyle and Sean are an excellent balance between serious and humorous and so easy to listen to.
- Two Disabled DudesOctober 5, 2017 by Dlittell from United States
The podcasts are informative for the FA community and all disabled people. Kyle and Sean are entertaining and fun to listen to. The topics are relevant and important. The guests are phenomenal. I encourage everyone with a disability or cares for someone with a disability to listen.
- Two Positive, Awesome Dudes!October 5, 2017 by CPConstantlyVaried from United States
If you ever need some perspective on life and a good laugh, listen to these guys. Other people in their situation could be pessimistic and cynical (with good reason!) but these two are the most positive and witty podcasters out there. Super impressed with them, keep it up!
- Two Awsome DudesOctober 5, 2017 by BarryByrne from United States
The podcast always has a lesson for us all. Keep up the great work guys. You inspire the whole FA community to be kind, thoughtful and keep hope alive (not to mention hilariously funny and fun).
- Inspiring Motivating and EntertainingOctober 5, 2017 by QFinnie from United States
I love listening to these guys and the great guests that they have on their show. It is always educational, inspiring and motivating. Kyle and Sean's outlook, humor and grace that they maneuver rare disease with is amazing and an awesome way to spread awareness and learn about the different aspects of living with FA. Thank you for sharing your adventures with us!
- Listen you won't be disappointedOctober 3, 2017 by jtw62 from United States
They are funny, interesting, fun, and informative.
- Thanks to Kyle and SeanSeptember 29, 2017 by courtney_mccormick from United States
Thank you for your openness, for your advocacy, and for the gift of this podcast.
- My New FaveSeptember 10, 2017 by katstevens8 from United States
As a rare disease advocate I appreciate finding joy in the journey! Kyle and Sean nail it in these awesome podcasts. Bringing humor and humility in each story. Bravo!!!
- Crazy taxis, evil catsAugust 31, 2017 by Facebook fan x 200 from United States
Abbott and Costello, Farley and Spade, Christmas and Dunne, and now... Bryant and Baumstark. I'm still trying to figure out who's the straight man. Whether it's a crazy taxi driver or feral in their kitchen, these two dudes make learning about the disabled community fun. They navigate some pretty serious subjects while breaking it up with stories and their quirky sense of humor. The large variety of guests keeps me coming back for more. Looking forward to the next one!
- Should be called Two Awesome DudesJune 20, 2017 by sackingsjessa from United States
Really great insight to living with a disability and how to push beyond. Fun and effortless conversation. Funny and charasmatic dudes. A postive and encouraging podcast for all. Keep up the great work!
- Amazing podcastMay 6, 2017 by Sput-nick-nick from Australia
Really loving this podcast. Great to hear Sean and Kyle talking about how life is more about how you react than what happens to you and really facing up to their disease. Amazing to hear their stories and really feel like you are part of their conversation and journey.
- Wonderful podcastApril 1, 2017 by Megfiona from United States
Kyle and Sean have such an effortless way about their conversations. They are funny, informative, inspirational, and genuine. I very much enjoy listening to and supporting this podcast. And I'll keep trying to contact people at Uber or Lyft to sponsor you. 🙂 Thanks for doing such great work!
- Inspirational, optimisticMarch 29, 2017 by Teroid from Australia
This podcast is great. Two things stand out for me so far: 1. Sean and Kyle talking about dealing with diagnosis very openly and honestly and concluding that by being involved in raising awareness of FA "I take control of my FA. It no longer controls me." 2. Your life is defined 10% by things that happen outside your control and 90% by how you respond. I look forward to hearing more pearls of wisdom!
- InspirationMarch 9, 2017 by JMStaub from United States
Love these guys; they're a must listen for anyone living with a disabling condition, and an example for all.
- Such a positive perspective!February 1, 2017 by Monica-colorado from United States
I love these guys and I am so happy to have found their podcast. I love their attitude about traveling despite mobility challenges. My husband has MS, and while I think we have a can-do attitude, we have a lot to learn from Kyle and Sean.
- It is life!January 29, 2017 by MiniMe_Sar from United States
This has truly helped me and my husband with his diagnosis. He wanted to ignore it for a very long time and hearing how you both handled your news was so great! Knowing people with disabilities (and in our case, THIS one) and hearing they lead normal lives is so refreshing instead of all they are told they CAN'T do! Love how it covers things that happen everyday and how different people cope.
- Makes us feel understoodJanuary 26, 2017 by Chollingsworth62 from United States
Really enjoying this podcast from Kyle and Sean. They inspire all people. Everyone can take away a lesson in life from them.
- The Unspoken TruthJanuary 23, 2017 by Avery Zaritsky from United States
I listened to this in the car this morning while driving my kids to school. By the time we got there, we were all laughing and they said "pause it, play the rest at pick up! We want to hear it!" Its so nice to know I'm not fighting the disabled battle alone and it gave me and my family back some tolerance! Very inspiring, keep up the conversation!!!
- Smart, funny, caring, informativeJanuary 22, 2017 by hbredfeather from United States
I love this podcast! I really appreciate the honest, open sharing that is peppered with laughter & good information about navigating the world for those with (and without) disabilities. The Welcome episode really sets the stage for what Kyle & Sean are facing with FA and it also reveals a friendship that is fun to listen in on. I've listened to the next 3 episodes so far & enjoyed them all - it's helping me with how I view myself and others in the world. We all face challenges and struggles. The hosts encourage us all to live better in each moment, yet apply compassion when we each may stumble. This podcast is a bright spot and motivation to "live with urgency" as a Kyle & Sean do. Thanks dudes!
- Real peopleJanuary 19, 2017 by Famlw from United States
As an able-bodied individual, I find this podcast so helpful and genuinely interesting. Kyle and Sean's stories of their real life experiences have helped me see their challenges from a different perspective.
- Thumbs up - A1January 17, 2017 by BarryRice80 from Ireland
Loving this podcast. Relaxed, frank and often funny conversation about the challenges and nuances of living life with a disability. Have listened to 4 episodes and it's now my favourite podcast. Keep up the good work lads. BR
- 00, 01, 02, 03January 17, 2017 by Spinner's Dad from United States
All 4 sessions are great!
- Brilliantly upliftingJanuary 8, 2017 by Adam Griffies from United Kingdom
As someone with FA myself, listening to this has been amazing. Such a great insight into life with Friedreich's Ataxia, or maybe any other disability. Would definitely recommend listening.
- Add this to your playlist!January 2, 2017 by Howard Hess from United States
Meet Kyle and Sean, two dudes who suffer from Friedreich's Ataxia (FA). Unfamiliar with FA? Doesn't matter. Give 'em a listen. You won't find two more genuine and likeable guys out there. Amongst their friendly banter and casual conversation, you'll find insight, inspiration, and encouragement... all this and more from a couple of guys who don't let their disability define what they can and cannot do.
- Your new favorite podcast. For real.December 13, 2016 by EMagone from United States
If you don't already know Kyle, level yourself up and do some research. One of the most amazing humans I've been fortunate to encounter. This is just the latest layer of his epic legacy in the world. <3
- Awesome perspective on disability.December 13, 2016 by Matt Lafleur from United States
Gives some much-needed brevity to the lives of people with disabilities. Doesn't try to be showboating or sugary inspirational. Just genuine. 2 dudes talking over Skype about their lives, which tends to be affected by a rare disorder they share, Friedreich's ataxia. Poignant. Can't wait for more episodes.