Two Disabled Dudes - Living with Urgency

Two Disabled Dudes - Living with Urgency

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!

Episodes

May 16, 2022 46 min
James 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. 
Share
Mark as Played
Ted 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.

Share
Mark as Played

Tom 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.

Share
Mark as Played
Amy 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 ...
Share
Mark as Played
April 17, 2022 34 min

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.

Participate in Disability Book Week, April 23-29.

Share
Mark as Played

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.

Find Joe Sooch on YouTube o...

Share
Mark as Played
April 3, 2022 44 min

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.

Share
Mark as Played

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.

Share
Mark as Played
March 20, 2022 41 min

March 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.

Share
Mark as Played
Rude 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.
Share
Mark as Played
Ennis 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.
Share
Mark as Played

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

Share
Mark as Played
February 21, 2022 32 min

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.

Share
Mark as Played
February 14, 2022 45 min
We 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.
Share
Mark as Played
December 5, 2021 34 min

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.

Share
Mark as Played

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.

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.

Share
Mark as Played

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.

Share
Mark as Played

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.

Share
Mark as Played

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 Ataxi...

Share
Mark as Played

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.

Share
Mark as Played

Popular Podcasts

    Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations.

    Crime Junkie

    If you can never get enough true crime... Congratulations, you’ve found your people.

    Morbid: A True Crime Podcast

    It’s a lighthearted nightmare in here, weirdos! Morbid is a true crime, creepy history and all things spooky podcast hosted by an autopsy technician and a hairstylist. Join us for a heavy dose of research with a dash of comedy thrown in for flavor.

    Stuff You Should Know

    If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks then look no further. Josh and Chuck have you covered.

    Sympathy Pains

    Hosted by Laura Beil (Dr. Death, Bad Batch), Sympathy Pains is a six-part series from Neon Hum Media and iHeartRadio. For 20 years, Sarah Delashmit told people around her that she had cancer, muscular dystrophy, and other illnesses. She used a wheelchair and posted selfies from a hospital bed. She told friends and coworkers she was trapped in abusive relationships, or that she was the mother of children who had died. It was all a con. Sympathy was both her great need and her powerful weapon. But unlike most scams, she didn’t want people’s money. She was after something far more valuable.

Advertise With Us

For You

    Music, radio and podcasts, all free. Listen online or download the iHeart App.

    Connect

    © 2022 iHeartMedia, Inc.