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Two Disabled Dudes - Living with Urgency

Health & Wellness Podcasts

The 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. Join us, subscribe, and tell a friend!

The 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. Join us, subscribe, and tell a friend!

Location:

United States

Description:

The 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. Join us, subscribe, and tell a friend!

Language:

English


Episodes

179 – Keep Your Eye On The Ball

4/17/2022
Completing 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. -- Check out Disability Book Week, April 23-29.

Duration:00:34:33

178 – Man Turning Into Stone – Joe Sooch

4/10/2022
Joe 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 interview us...

Duration:00:46:26

177 – The only thing to fear is…

4/3/2022
Some 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

Duration:00:43:59

176 – Rare Disease Symptoms – The Devil You Know

3/27/2022
Promising 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.

Duration:00:26:05

175 – Making Noise about Hemophilia – Max Feinstein

3/20/2022
March 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

Duration:00:41:49

174 – The Dudes with Squirmy and Grubs

3/13/2022
The 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:...

Duration:00:45:12

173 – Don’t be Weird – Ennis Rook Bashe

3/6/2022
Ennis 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

Duration:00:37:20

172 – Rare Disease is Complicated but There’s Reason For Hope

2/27/2022
While 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

Duration:00:29:00

171 – What if Everyone is Disabled?

2/20/2022
Our 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

Duration:00:32:35

170 – What’s Your Strategy?

2/13/2022
Season 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.

Duration:00:45:30

169 – Season Finale – NO REGERTS!

12/5/2021
Turning 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

Duration:00:34:32

168 – 2DD Forum: CureDuchenne FUTURES Conference 2021

11/28/2021
In 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.

Duration:00:46:00

167 – Peace of Mind With Mobility Roadside Assistance

11/21/2021
Flat tire! Stranded on the side of the highway. If you have a mobility challenge, or more than two people, you may not be able to ride in the tow truck with your car. That's where Mobility Roadside Assistance can help. They will send an accessible vehicle to pick you up. Listen to find out all about their service from their CRO, Marcus Norton. **GIVEAWAY** We’re stoked to be partnering with Mobility Roadside Assistance to give away a 1 year subscription to their premium service. The winner...

Duration:00:41:54

166 – Ultra Rare Drugs at no Cost to the Patient – Stan Crooke

11/15/2021
Stan Crooke has been in the drug development game for a long time. He is the founder of Ionis Pharmaceuticals and now he has pioneered a method to develop and provide medicines to Ultra Rare communities of 30 patients or less. This idea blew our minds and I think you will enjoy hearing from Stan. Links: N-Lorem Foundation Undiagnosed Disease Network

Duration:00:39:49

165 – Coaching for Rare & Chronic Conditions – Denise Archilla

11/7/2021
Dealing with a Chronic disease can be a lonely situation, especially for young people who may feel misunderstood. That's why Denise Archilla started Chronic Warrior Coaching and the Chronic Warrior Collective - to have a place for kids to be seen and heard. Listen to hear about some of the struggles of a Chronic Warrior and how Denise is addressing those needs. Links for this episode: Chronic Warrior Collective Nebraska Ataxia

Duration:00:47:01

164 – Mental Health: Why Talking About the Tough Stuff Takes the Weight off

10/31/2021
In episodes 155 and 157, we talked about the symptoms of Friedreich's ataxia (FA) and how they affect us, especially the mental and emotional aspect of dealing with the challenges. We both experienced some relief in the following ew weeks - merely because we got that stuff off our chest. Why is that? Listen as we discuss.

Duration:00:25:35

163 – Actor, Producer, Person – Patrick James Lynch

10/24/2021
Patrick James Lynch is CEO of Bloodstream Media and creator of award winning documentaries, TV Shows, podcasts, and other media that entertains and educates about rare disease. He is a big presence in the Hemophilia community but has a certain resistance to becoming "Mr. Hemophilia". We really enjoyed the conversation and we hope you do too! https://youtu.be/ZVw9lcyM_bY Some of Patrick's work: Blood Stream Media The Blog Post we talked about in the episode. Stop the Bleeding Web Series...

Duration:00:56:30

162 – Superheroes With Once Upon A Gene

10/17/2021
Today we feature episode 87 - Superheroes from our friend Effie Parks at the Once Upon a Gene Podcast. This episode features a few different people and stories about the superheroes in their lives. Check out our interview with Effie in an earlier episode: Episode 129.

Duration:00:22:35

161 – Men’s Mental Health in Rare Disease With David Ross

10/10/2021
It is understood that mental health is of huge importance in life, and it can be amplified in the rare disease community. And then add society's pull on the situation - Men are seemingly expected to be stoic and strong no matter what. You've got a recipe for a particularly difficult situation. That's what David Ross is addressing with his men's group focused on Men's Mental Health in Rare disease. Listen to find out more.

Duration:00:41:18

160 – Money Talks With the Dudes

10/3/2021
Money plays a roll in nearly all situations in life - especially when you factor in rare disease or another medical issue. In this episode the Dudes talk about how money and planning for the future factors into different aspects of their lives - including the age old question "can money buy you love?"

Duration:00:46:51