Two Disabled Dudes - Living with Urgency
450 episodes - English - Latest episode: about 2 months ago - ★★★★★ - 107 ratingsThe 2DD podcast is about setting sights beyond the challenges in your life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster, and practical thoughts that you can apply to your life with this podcast.
Hosts Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities. However both dudes have completed several long distance bike rides including “The World’s Toughest Bike Race” - Race Across America (RAAM). Their RAAM journey is the subject of an award winning documentary called The Ataxian. Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch.
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Episodes
205 - Finally, A Dating App For People With Disability
February 13, 2023 08:01 - 52 minutes - 42.5 MBIn this Episode: Almost a year later, Kyle gives an update on his wheelchair drama. You Got This, Mental Health featuring Andra Stratton - Managing our expectations for Drug Development. The Dateability App - Designed by someone with a disability for the disabled community. Thank you notes - Dr. Anna Stepanova & Aaron Fisher After learning of her own disability and chronic illness, Jacqueline was exposed to a persistent ableist mentality and she wasn’t a fan. This showed up a lot ...
204 - What If Kindness Isn't The Answer?
February 06, 2023 08:01 - 40 minutes - 32.2 MBWelcome to Season 9! Dolly Parton wants to see more kindness in 2023. However if you ask Sean, kindness is not the issue - it's awareness of others around you. It will make sense after you listen. Sean's column on the subject: No Good Excuse This episode brought to you in part by Horizon Therapeutics. In honor of Rare Disease Day, the #RAREis Global Advocate Grant program is awarding 50 grants totaling $250,000 to global patient advocacy organizations working to support the community....
203 - Reason vs Excuse: It's Up To You
November 28, 2022 05:01 - 32 minutes - 26.2 MBThere's a common debate going on in many of our heads when it comes to committments. Whether it's meeting a friend for coffee, or going to a concert with a group, we have to decide if we can make it. If we decide not to go or even worse, cancel at the last minute, is it for a legit reason or are we just making an excuse? Ultimately that's for you to decide for yourself... Resources mentioned in this episode: Intro post for Sean's column: No Good Excuse 2DD episode 178 - Man Turning ...
202 - Addressing Independence and Accessibility with Rare Disease
November 21, 2022 08:00 - 42 minutes - 34.2 MBMaking the transition to independence is difficult to begin with. It is further complicated if you have a rare disease. Lauren Riggs joins The Dudes to talk about her recent experience moving away from home to go to school at University of Oklahoma and then grad school in Texas. Lauren lives with Friedreich's ataxia (FA). Her own journey with accessibility leads her to facilitate accessibility for others. During this episode, Lauren explains the Spoon Theory which many people living with r...
201 - How Does Positivity Become Toxic?
November 14, 2022 08:00 - 53 minutes - 43.3 MBWhen Katie Lloyd's son was diagnosed with a rare, lifethreatning disease, she began to notice that people around her reacting to the news in some unintentionallyinsensitive ways. When we witness someone going through a difficult situation, our first impulse is to say something encouraging: "Chin up!" "The Sun will come out tomorrow". However, responses such as this can be counterproductive because they lack empathy and understanding. Instead, perhaps we should simply acknowledge the diff...
200 - State of the Podcast and A Few Favorite Moments
November 07, 2022 02:11 - 50 minutes - 41.2 MBWe have been doing this for 6 years - we're still friends, and we hope a few people have enjoyed listening. Let's celebrate episode 200 with a little reminiscing, a few old snippets, and a brief look at the future of the show. Some of our favorite epispdes that we mentioned: 055 - Facing the Realities of Physical Changes 073 - Jeff Bell Part 1 - What is OCD? Jeff's cause: The A2A Alliance | Adversity to Advocacy 083 - Reasons to Push Our Limits 166 - Ultra Rare Drugs at no Cost t...
199 - RAVE: A Principle Everyone Ought to Consider
October 31, 2022 06:07 - 45 minutes - 36.7 MBA guiding principle Sean has adopted from his employer applies to every area of life - Respect, Appreciate, and Value Everyone, a.k.a RAVE. As a Fortune 100 Best Companies to Work For, Nugget Markets, Inc. is careful with the culture they foster and honor. In this episode, Sean shares a glimpse into this particular core value that is worth everyone’s consideration. A couple of mentions in Episode 199: Episode 040 with Arash Bayatmakou CanDo’s Keto Krisp. Listen to ep198 for a discount...
198 - What's Your CanDo Story?
October 24, 2022 01:38 - 41 minutes - 33.3 MBAdam Bremen is the co-founder of CanDo, the maker of the #1 Keto bar on Amazon, Keto Krisp. Despite living with Cerebral Palsy and having experienced much hardship and loss in his life, Adam is one of the most positive and genuine people we've ever had on the show. The success of his brand is not surprising given his outlook on life and his support for others. We've tried Keto Krisp and we're fans. You can try the delicious bars too, by visiting tastecando.com and entering ADAMCANDO at che...
197 - Looking for the Pause Button on Friedreich's Ataxia
October 17, 2022 01:38 - 36 minutes - 29.2 MBRare Disease is ever present and relentless. Sometimes we wish we could push the pause button and live an able bodied life for a little while. Kendall harvey writes about this struggle in her recent column for Friedreich's Ataxia News. The article is called FA Progression No Longer Has Total Contr Olver My Life and she talks about it with The Dudes. Follow Kendall on Instagram as she chases her 9th fundraising title for rideATAXIA Dallas.
196 - Two Disabled Slackers
October 09, 2022 22:59 - 37 minutes - 30.4 MBSean is overwhelmed at the moment. He has too much on his plate and life is chaotic. Kyle's plate is pretty full too. However there's always something to talk about. Listen as the dudes talk about being over subscribed and possible strategies to avoid this situation.
195 - Leveraging Crypto for Rare Disease - Vibe Bio CEO, Alok Tayi
October 02, 2022 22:41 - 34 minutes - 27.9 MBThe biggest obstacle to treating patients with overlooked diseases isn’t finding potential treatments — it’s funding them. Alok Tayi Join the Dudes as they get a glimpse into the world of Cryptocurrency and discover how patient communities can have more control of research direction as they chat with Vibe Bio CEO, Alok Tayi.
194 - Taking It Personally May Hold You Back
September 26, 2022 00:51 - 37 minutes - 30.1 MBSean loves to play the game Risk online with people he doesn't know. When someone attacks him, rather than focusing on trying to win the game, his strategy is sidetracked by the need to destroy this person who injured him. Until one day he realized it was better to just play the game and not take attacks personally. This concept relates to many situations for The Dudes. Listen and enjoy this deep conversation :-) This episode was brought to you in part by Horizon Therapeutics. In 2017...
193 - Accessibility Matters, Air Travel Is Not Exempt
September 18, 2022 13:07 - 49 minutes - 39.9 MBKyle's Wheelchair was damaged on an American Airlines flight in April. It is now September and it is just now getting resolved. While working his way through the situation, Kyle phoned a friend, Mary Caruso who provided advice and encouragement about the process and how to conduct oneself while advocating for what you need. Ultimately Mary's advice lead to a reimbursement check from the airline. You gotta know your rights and you gotta believe that you are just as important as the pe...
192 - Life's Short, Live With Intention
September 11, 2022 21:55 - 42 minutes - 34.4 MBIn this week's round of Guess What, both dudes came out winners. Kyle won because Sean gave it away. Sean won on a technicality. Then, Kyle introduced a topic based on his recent cycling adventure: We are constantly faced with decisions that affect the outcome of our lives. Our response to these decisions is often determined by the priorities we set for ourselves either consciously or unconsciously. Through their discussion, the Dudes challenge each other to be intentional about s...
191 - A Mother Who Never Stops
September 04, 2022 21:45 - 51 minutes - 41.7 MBTracy Dixon Salazar is a mother, scientist, and Executive Director of the Lennox-Gasteau Syndrome Foundation. "I don't think we should be writing off Rare disease Patients and assigning them death sentences anymore. I think we should be rolling up our sleeves and doing a covid like movement to actually start saving some people's brains" Tracy Dixon-Salazar Lennox-Gastaut Syndrome (LGS) is a severe epilepsy syndrome that develops in young children and often leads to lifelong disability...
190 - Our Reactions Determine Our Outcomes
August 28, 2022 22:30 - 28 minutes - 24.9 MBThere are so many things in life that are out of our control but our reaction to them is always in our control.
189 - LIVE at Chan Zuckerberg Initiative Rare As One
August 21, 2022 23:55 - 1 hour - 50.9 MBAt the beginning of June we were invited to moderate a panel at the Chan Zuckerberg Initiative Rare as One Annual Meeting in San Diego, CA. Most of the time diagnosis of a rare disease comes out of the blue and includes life altering, and life shortening symptoms. The effect of which leave familiy members and friends to manage care and figure out how they might solve the problem. Many times this means starting a nonprotit organization to advance science toward a treatment and cure. Pati...
188 - Dealing With Disability Among Friends
August 14, 2022 21:30 - 32 minutes - 25.9 MBIs Kyle's dad trying to kill him? A new season, a new segment: Guess What? Plus: Living with a disability can be isolating. Especially among able bodied friends. However like most things in life it's about how we react. Whether that's communication about the situation or being proactive and finding more accessible activities, our reaction will determine our experience and the ecperience of the group. Sound from zapsplat.com.
187 - Life Lessons From the Bike Trail
August 07, 2022 18:49 - 29 minutes - 24.4 MBKyle just finished a crazy cycling adventure in the backwoods of Montana and Idaho. 12 days in, Kyle called Sean with some insights from the journey which we can all apply to our lives every day. Sean's analysis may hit home with you.
S8 - Catching Up with The Dudes
July 31, 2022 22:46 - 32 minutes - 26.2 MBThe Dudes take 8 weeks off from publishing episodes between seasons. However, they stay pretty busy with their day jobs, extracurricular activities, and even this podcast. With the start of Season 8, this episode features a conversation between Kyle & Sean catching up on the busy summer they've had. The Dudes mention a few things they'd love for you to check out: For rideATAXIA events and impact, visit www.rideataxia.org For team de:terminence, visit www.determinence.com To follow Kyl...
185 - Season Finale - Nothing Stays the Same
May 30, 2022 00:40 - 36 minutes - 29.7 MBUpdate on Google's speech recognition app for people with speech impairments. Plus, a discussion about how acknowledgement of the progression of disease affects planning in life. Once again, talking about the tough stuff may help us along in our journey with any health challenge.
185 - Season Finale - Acknowledging Rare Disease Progression
May 30, 2022 00:40 - 36 minutes - 29.7 MBUpdate on Google's speech recognition app for people with speech impairments. Plus, a discussion about how acknowledgement of the progression of disease affects planning in life. Once again, talking about the tough stuff may help us along in our journey with any health challenge. Listen and enjoy!
184 - Thriving With Duchenne - Jett Foundation
May 22, 2022 16:47 - 1 hour - 66.6 MBLiving beyond circumstancemeand finding ways to thrive with whatever hand you're dealt. In this episode we hear from 4 young men who are thriving in their lives with Duchenne Muscular Dystrophy. Jett Foundation put together this panel as their community joined in the recognition of Rare Disease Day on the last day in February. The mission at Jett Foundation is to extend and enrich the lives of individuals affected by Duchenne muscular dystrophy and other neuromuscular disorders. Jett ...
183 - Doing The Right Thing with James Mackay, CEO Aristea Tx
May 16, 2022 01:05 - 46 minutes - 38.2 MBJames Mackay, PhD, Founder, President and Chief Executive Officer of Aristea Therapeutics, has over 25 years of development and commercialization expertise in the pharmaceutical industry, including 6 drug product approvals across multiple therapeutic areas. James joins The Dudes to discuss his experience and how he is contributing to and benefiting from the biotech leadership community.
182 - Comparing Ted Lasso to Reality with Heidi Behr, LCSW
May 08, 2022 23:05 - 49 minutes - 39.5 MBTed Lasso is a popular show on Apple TV about an american football coach who gets recruited to a pro soccer team in London. One of the show's strongest themes is mental health and how it affects everything we do. Heidi Behr is a Licensed Clinical Social Worker (LCSW) and she joins us to talk about how Ted Lasso Portrays mental health and therapy.
181 - Every Person Matters with Tom Hamilton
May 02, 2022 00:54 - 51 minutes - 41.4 MBTom Hamilton is a changemaker in the FA and Rare Disease Communities. He works tirelessly to promote treatment progress. He is also a father and is constantly balancing between protection, and encouragement of his daughter Annie and all those in the FA community. Listen as Tom shares his perspective on parenting, advocating, and working toward a treatment.
180 - The Not So Dark Side with Amy Grover
April 25, 2022 02:00 - 43 minutes - 36.2 MBAmy Grover has spent more than a decade in the rare disease space - cultivating her passion for helping others in the nonprofit world until recently. Now, Amy is using her expertise and heart of gold to bring patients and industry together in pursuit of better outcomes. As the newly appointed Senior Director of Patient Advocacy with Catalyst Pharmaceuticals, Amy is well-positioned to help meet the needs of patients while advancing treatments and services within the for-profit arena. Amy joins...
179 - Keep Your Eye On The Ball
April 17, 2022 23:24 - 34 minutes - 27.8 MBCompleting tasks is about focus. If we take our eye off the ball, that's when we get off track. Listen as the Dudes talk about how this principle applies in their life. Participate in Disability Book Week, April 23-29.
178 – Man Turning Into Stone – Joe Sooch
April 11, 2022 00:05 - 46 minutes - 37.6 MBJoe Sooch points out that we only have one life to live so we better make the most of it. He has a rare disease called Fibrodysplasia ossificans progressiva (FOP) - a genetic disorder that causes soft tissues to transform permanently into bone. Joe uses a wheelchair and FOP has limited his physical abilities in many other ways. However he is determined to make the most of the time he's been given. https://youtu.be/jJZwCGpHJ3s Find Joe Sooch on YouTube or Instagram. Listen to Joe inte...
178 - Man Turning Into Stone - Joe Sooch
April 10, 2022 22:13 - 46 minutes - 37.6 MBJoe Sooch points out that we only have one life to live so we better make the most of it. He has a rare disease called Fibrodysplasia ossificans progressiva (FOP) - a genetic disorder that causes soft tissues to transform permanently into bone. Joe uses a wheelchair and FOP has limited his physical abilities in many other ways. However he is determined to make the most of the time he's been given. Find Joe Sooch on YouTube or Instagram. Listen to Joe interview us on his podcast T...
177 – The only thing to fear is…
April 03, 2022 14:34 - 44 minutes - 35.8 MBSome fears are healthy and they keep us from getting hurt. Some fears are totally legit but they may keep us from enjoying the little things in life. Some fears are a little ridiculous and silly. https://youtu.be/_7vML9C3PZk
177 - The only thing to fear is...
April 03, 2022 13:51 - 44 minutes - 35.8 MBSome fears are healthy and they keep us from getting hurt. Some fears are totally legit but they may keep us from enjoying the little things in life. Some fears are a little ridiculous and silly.
176 – Rare Disease Symptoms – The Devil You Know
March 27, 2022 22:52 - 26 minutes - 21.3 MBPromising treatments for many rare diseases are on the horizon. As they start to become a reality, it's important for us to adjust our expectations of what symptoms could potentially be relieved. Listen as the dudes discuss their symptoms and show appreciation for friends and family who are deeply committed to traveling this rare disease journey.
176 - Rare Disease Symptoms - The Devil You Know
March 27, 2022 22:06 - 26 minutes - 21.3 MBPromising treatments for many rare diseases are on the horizon. As they start to become a reality, it's important for us to adjust our expectations of what symptoms could potentially be relieved. Listen as the dudes discuss their symptoms and show appreciation for friends and family who are deeply committed to traveling this rare disease journey.
175 – Making Noise about Hemophilia – Max Feinstein
March 21, 2022 00:28 - 41 minutes - 33.6 MBMarch is Bleeding Disorders Awareness Month! He is an accomplished musician and inventor - Max Feinstein says he's been a noisemaker his whole life. He uses music to express his journey with Hemophilia and connect with others in the Rare Disease community. https://youtu.be/cHLXm_N_pVI
175 - Making Noise About Hemophilia
March 20, 2022 23:46 - 41 minutes - 33.6 MBMarch is Hemophilia Awareness Month! Most people would call him an accomplished musician - Max Feinstein says he's been a noisemaker his whole life. Recently he has been using music to express his journey with Hemophilia and connect with others in the Rare Disease community.
174 – The Dudes with Squirmy and Grubs
March 13, 2022 21:28 - 45 minutes - 36.3 MBThe Squirmy and Grubs YouTube channel is extremely popular with 900k followers and a few videos over 4 Million views. This kind of recognition comes with challenges including online comments alleging all kinds of conspiracies, however Shane and Hannah Burcaw continue to be an incredible example for the rare disease and disability communities with their marriage and their outlook. Check out their recent collaboration with Genentech and singer/song writer, James Ian: https://youtu.be/ZLyRpDn...
174 - The Dudes with Squirmy and Grubs
March 13, 2022 13:00 - 45 minutes - 36.3 MBRude online comments are just part of the challenge for interabled couple and YouTubers Shane and Hannah Burcaw. Battling ableism has become part of the struggle but they continue to be an incredible example for the rare disease and disability communities with their marriage and their YouTube channel: Squirmy and Grubs which has over 900k subscribers. Check out their collaboration with Genentech at: smamyway.com.
173 – Don’t be Weird – Ennis Rook Bashe
March 07, 2022 01:44 - 37 minutes - 30.2 MBEnnis Rook Bashe writes fantasy stories featuring disabled characters partly for social justice but mostly because "it's just fun". We certainly had fun in this conversation. Find more at ennisrookbashe.com
173 - Don't be Weird - Ennis Rook Bashe
March 06, 2022 14:17 - 37 minutes - 30.2 MBEnnis Rook Bashe writes fantasy stories featuring disabled characters partly for social justice but mainly because "it's just fun." We certainly had fun in this conversation. Learn more about Ennis and their latest work at ennisrookebashe.com.
172 – Rare Disease is Complicated but There’s Reason For Hope
February 28, 2022 03:42 - 29 minutes - 23.8 MBWhile seeking to live beyond circumstances, we often look past the challenges of our situation. Maybe this is good, maybe it's bad, maybe both... As the Dudes ponder this thought, they discuss reasons to remain optimistic. Enjoy! BTW, Feb 28 is Rare Disease Day
172 - Rare Disease is Complicated but There's Reason for Hope
February 27, 2022 17:19 - 29 minutes - 23.8 MBWhile seeking to live beyond circumstances, we often look past the challenges of our situation. Maybe this is good, maybe it's bad, maybe both... As the Dudes ponder this thought, they discuss reasons to remain optimistic. Enjoy! BTW, Feb 28 is Rare Disease Day
171 – What if Everyone is Disabled?
February 21, 2022 03:35 - 32 minutes - 26.2 MBOur friend Erin Pieper wrote a book called Dismantling the Disability (release date 2/22/22) and in this episode she sets up the discussion by wondering what the world would be like if everything were set up for people with disabilities. Links: Erin's book Erin's Facebook Erin's Instagram
171 - What if Everyone Is Disabled?
February 21, 2022 02:58 - 32 minutes - 26.2 MBOur friend Erin Pieper wrote a book called Dismantling the Disability (release date 2/22/22) and in this episode she sets up the discussion by wondering what the world would be like if everything were set up for people with disabilities.
170 – What’s Your Strategy?
February 14, 2022 02:43 - 45 minutes - 36.5 MBSeason 7 Kickoff! We all have goals but we may never achieve them unless we have a specific strategy to reach them. In this episode, the dudes discuss a few of their 5 and 10 year goals and a few strategies to get them there. Save 20% off your 2022 2DD calendar by entering code season7 at checkout.
170 - What's Your Strategy?
February 14, 2022 02:05 - 45 minutes - 36.5 MBWe all have goals but we may never reach them unless we have a specific strategy to reach them. In this episode, the dudes discuss a few of their 5 and 10 year goals anfd a few straqtegies to get them there.
169 – Season Finale – NO REGERTS!
December 06, 2021 02:22 - 34 minutes - 27.7 MBTurning 40 caused both of us to reflect on everything we've done up to this point. Do we have regrets? We can't change the past but we can decide what we want and go after it from this day forward. -2022 Calendars are on the way! Visit our "Shop" to orders yours! https://youtu.be/6dIEr2TZIQ8
169 - Season Finale - NO REGERTS!
December 05, 2021 21:32 - 34 minutes - 27.7 MBTurning 40 caused both of us to reflect on everything we've done up to this point. Do we have regrets? We can't change the past but we can decide what we want and go after it from this day forward.
168 – 2DD Forum: CureDuchenne FUTURES Conference 2021
November 28, 2021 22:06 - 46 minutes - 37 MBIn this 2DD Forum, our Friends Jake and Glenn taught us a lot about the mindset required to live a fulfilling life with Duchenne or any challenge. We enjoyed the conversation and we hope you do too. The CureDuchenne FUTURES Conference focuses on bringing education, resources, and connection to the Duchenne Muscular Dystrophy community. The 2021 agenda centered on Quality of Life. To watch the video version of this discussion, click here.
168 - 2DD Forum: CureDuchenne FUTURES Conference 2021
November 26, 2021 18:30 - 46 minutes - 37 MBThe CureDuchenne FUTURES Conference focuses on bringing education, resources, and connection to the Duchenne Muscular Dystrophy community. The 2021 agenda centered on Quality of Life. In this 2DD Forum, our Friends Jake and Glen taught us a lot about the mindset required to live a fulfilling life with Duchenne or any challenge. We enjoyed the conversation and we hope you do too.