Two Disabled Dudes

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...

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 Wa...

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 B...

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 diseas...

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?"

Thanks to the AVROBIO team for a great day of patient advocacy. We feel so honored to be a part of these conferences and always take so much away from them.  And a huge thank you to panelists Jordan, Darren, and Kim. Gene Therapy treatments have the potential to make a profound impact in rare disease. However, these potentially permanent therapies present unique considerations for any participant...

The Marfan Foundation is currently celebrating 40 years of service to patients and families affected by Marfan Syndrome and other related conditions. We had the honor of participating in their 36th annual conference with a virtual discussion featuring 4 panelists who have each been significantly affected by rare disease.  Marfan syndrome is a genetic condition that affects the body’s connective ti...

Old men know a lot.  Combined, these two Dudes have 37 years of experience living with Friedreich's ataxia/rare disease/disability, and we made some observations along the way. In this episode, using an idea we found in our friend, Kendall Harvey's column on Friedreich's Ataxia News , we explore what we would say to our newly diagnosed selves.   It's a very emotional episode and we hope you find v...

Anthony DeVergillo describes himself as an optimist.  He sees a problem and inserts himself to find a solution. Specifically in the area of video game accessibility, Anthony is motivated to make an impact with the joystick he invented to allow people with disabilities access to the games they love.  The project is called Overjoyed. Listen to our interview with Anthony and get motivated to improve...

Describing our challenges to another person is a powerful way to face them and find a way to think around them so these challenges don't become a roadblock in our lives.  The Dudes feel fortunate to have each other to share with and to have you listening! Discussion questions provided by Branding Science

August is SMA Awareness Month so we had a conversation with Nick Sinagra to learn about SMA and his journey with this rare disease.  Nick is a true leader for all the things he has accomplished and continues to accomplish, and for the attitude he brings to all that he does.  Plus hear about Nick's experience with Spinraza, a drug developed and FDA approved to treat SMA.

This was the 43rd annual National Taysachs and Allied Diseases (NTSAD) annual conference and we were honored to moderate a panel with Sarah, Kevin, and Staci. The video that Sean referenced near the beginning of the episode: https://www.youtube.com/watch?v=XFEXsquCA8U Learn More about the family conference at https://ntsad.org/index.php/2021-annual-family-conference More about NTSAD at https://nts...

User reviews and social media can be used to affect change in business and society.  It gets out of hand when users take advantage of the power that is in their hands.  Listen as the dudes discuss Social Media and this new thing called Bluetooth. Check out We Need a Mouse for a positive use of social media by our friend Luke Rosen and KIF1A .

Season 6 starts now with the introduction of a new segment called 'Picks for Season Six'. Today the Dudes pick their favorite podcasts of the moment. Kyle: Conan O'Brien Needs a Friend Sean: At the Table with Patrick Lencioni Sean and Kyle talk about some of the things they've been up to this summer which leads to some observations about specific areas of life the pandemic has affected.  Enjoy!