Two Disabled Dudes Podcast

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.

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 or Instagram.   Listen to Joe interview us on his podcast Two Mics, One Joe Sooch.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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

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.

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!  Some of Patrick's work: Blood Stream Media Stop the Bleeding Web Series Bombardier Blood documentary My Beautiful Stutter documentary

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.

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.

Money is a factor 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?"