Two Disabled Dudes Podcast

In 2012, at the age of 26, Kevin Schnurr was unexpectedly diagnosed with Alport syndrome after being rushed to the hospital with high blood pressure. After two years on peritoneal dialysis, he received a living donor kidney transplant from a close friend in May 2014. Kevin’s desire to help others in the rare disease community led to him volunteering at Alport Syndrome Foundation (ASF) in 2012. He later served in a position as ASF Social Media Specialist in 2014 and part-time Patient Outreach Coordinator in 2016. Kevin currently serves as the Director of Communications & Patient Engagement (since Oct. 2019). He has facilitated the Teen Program at ASF Family Meetings, represented ASF at patient advocacy events and conferences, and co-moderates the ASF Facebook Support Group Page. In his free time, Kevin loves playing guitar, attending concerts, and collecting/voraciously reading books. Website: alportsyndrome.org Socials: https://www.facebook.com/alportsyndromefoundation/ https://twitter.com/AlportSyndFn

Sean and Kyle are polar opposites in so many different ways.  But this is a strength rather than a weakness.  This week the Dudes discuss their differences and why they work well together.  

Like it or not, communicating with smart devices has become a huge part of our lives.  For people with disabilities, this communication can be an essential part of making it through the day.  However these devices have a hard time understanding speech that is outside what they've heard before. Google has launched an effort called Project Euphonia to retrain our devices to understand people who have speech impairments.  Bob MacDonald is one of the leaders of the project and he joins The Dudes to talk about the project and how we can all help out.

Blair Casey is the Assistant Executive Director of Team Gleason - an organization founded by former NFL player Steve Gleason. The organization is committed to providing for and finding solutions for persons living with ALS. Team Gleason’s staff and volunteers work tirelessly every day to empower those living with ALS to live with continued purpose and as productively and independently as possible. Blair joins the Dudes to talk about their work to support Google's Project Euphonia and how we can all work together to improve voice recognition for people who experience disarthria. To find out more and contribute your voice samples to the effort, visit: teamgleason.org/projecteuphonia

BONUS episode! We received a lot of comments about Episode 114 (the encounter with Debora) so we invited a few friends to join us to talk about the sometimes awkward interactions with strangers who may be uncomfortable with disability. Friends who joined us are Shandra and Christian from Florida, Leona from Colorado, and Effie Parks (host of the Once Upon a Gene Podcast) from Seattle.   This bonus episode is unedited. Enjoy!

If you could change something about yourself, what would it be?  In this episode, the dudes tackle this question as it relates to disability or as it relates to life in general. Listen and reach out if you have thoughts about this subject.

Where do we start after a life threatening diagnosis.  Start a YouTube Channel of course!  That's what Katie did.  She started connecting with the Vascular Ehlers Danlos Syndrome (VEDS) community and now she leads the VEDS Movement for the The Marfan Foundation. Find out more at thevedsmovement.org. And find out more about the people behind the movement at translucentone.blog

Curiosity about someone's disability often comes from a good place but depending on how it is delivered, it can create awkward or even offensive situations.  This week the dudes struggle with how to react in these awkward situations.  It's good for someone to ask questions but there is a line somewhere.  Listen for real life stories and honest conversation.

In the opening episode of Season 4, Sean and Kyle admit to being a little lazy lately and then commit to getting back on the wagon.  That's the power of accountability!  And it's the power of their commitment to their listeners - one insightful episode per week for the next 4 months! The meat of the episode is all about how we tend to define ourselves and each other by the immediate circumstances.  The Dudes postulate that perhaps we should be defined by the entirety of what we do rather than one or two things.   Let them know what YOU think: instagram.com/2ddpodast twitter.com/2ddpodcast facebook.com/twodisableddudes  

Why do we all react differently to a situation - especially when the stakes are high, such as the current situation with Coronavirus?  Sean and Kyle have a few thoughts to share but first we must hear about Sean's recent cluster at physical therapy, and Kyle explains how it is possible to lock yourself out of your own bathroom.  Season 4 starts in August but there are 111 other episodes to enjoy so check them out.  We hope you have a great summer!

We’ve had the privilege to work with Amicus Therapeutics on multiple occasions and each time we are moved by their commitment and consistent execution of their corporate mission. This virtual patient panel they facilitated is no exception! Three weeks into the company’s work-from-home arrangements due to COVID-19, Amicus wanted to continue connecting their team members with each other and the patient communities they work on behalf of. We were honored to moderate the conversation between Naomi (from the UK), Mike (from New Jersey) and David & Karen (from Arizona) for the global Amicus team and their families. The panelists helped us laugh, encouraged our resilience and inspired us to maximize our time as we embrace the rare disease journey and cope in times of uncertainty.

After a brave fight, Taylor Kane lost her Dad to a rare disease called Adrenoleukodystrophy (ALD) when she was 3 years old.  She subsequently found out that she was a carrier of this X-linked disease. For a long time it was believed that "carriers don't get symptoms."  However, that myth has been busted and Taylor Kane has a clear mission in life.  She started a non-profit called Remember the Girls that builds support and community for carriers of X-linked diseases.  What is X-linked?  The Dudes had the same question and you'll have to listen to find out. As much as anything in life, Taylor Kane loves to connect with other young carriers of Rare Diseases because connecting with someone who truly understands you is "like no other."  You can connect with her by reading her book Rare Like Us, and you can find her an Remember the Girls on social media at: Remember the Girls: Web: https://www.rememberthegirls.org/ Facebook: https://www.facebook.com/remembergirls Twitter: https://twitter.com/remember_girls Instagr

Hawken Miller is an accomplished young writer with a clear purpose in life.  He is an incredible representative for the Duchenne Muscular Dystrophy Community and he has a passion for the work of CureDuchenne. Writing is his chosen medium and he has a keen interest in the e-sports world.  He uses video games to connect with others in the Duchenne Community and he uses writing to explain video games to the every day person.  Hawken is a recent graduate of USC and his journalism experience includes The Sacramento Bee, KTLA, The Washington Post, and Bio News Services. Visit Hawken's website: http://hawkenmiller.com  Read his most recent columns: https://musculardystrophynews.com/category/hawks-eye-view-a-column-by-hawken-miller/ And find out about the work of CureDuchenne: https://www.cureduchenne.org/

As everyday life continues to be dominated by coronavirus Quarantine, The Dudes discuss the pros and cons of the situation.  They prognosticate about how things might change because of this pandemic.  Tune in and play along with the thought experiment.

A brief summary of this episode

Gabe Adams was born without arms or legs due to HanHart Syndrome. He joins us and shares so much about being "different" from other kids, finding his independence, dating, his upbringing in the Mormon-Christian church and so much more. Gabe is no stranger to people pointing, staring or talking negatively in extreme and cruel ways. Still, he has defined and recognizes his own value and has built a platform to inspire and encourage others. Don't miss this interview!

Sometimes frustrations get the better of us.  And in quarantine, we are all on edge a little more than usual.  In this episode, the dudes put their focused conversation aside for a bit to vent a few frustrations and ramble aimlessly. Enjoy :-)

Jason Levy was a well-paid Silicon Valley executive when multiple accidents caused severe Traumatic Brain Injury.  His whole life changed and he found himself in much different circumstances than he had envisioned for his life.   Through his struggles, Jason realized that he must let go of the old Jason and embrace the new one.  Once he realized this, he started to build a satisfying life on his new path. Join us to learn lessons that anyone can apply to their own situation.

Beth Kolbe was injured in a car accident and lost the use of her lower body.  Subsequently she went to Harvard, swam in the paralympics, received a law degree from Stanford, practices healthcare law in Washington DC, and gives back to the disability community through pro-bono work.  She's kind of a big deal - listen to hear her perspective.

We encounter decisions constantly.  Some are simple with clear answers like "Should I do the dishes today?" but some are complex and consequential like "Should I cancel upcoming travel due to coronavirus?".  The Two Disabled Dudes believe that Life is about How We React.  How we think when we are faced with decisions and how we weigh out the potential consequences can have an impact on how we react.  In this episode, the dudes discuss 4 simple tips to help us think about the decisions in our lives: Remove the emotion from the equation - Many tough decisions in our lives evoke abundant emotion which can often cloud our reasoning.  If we can temporarily remove emotion from the situation as we are thinking about the decision, it will help us focus on the facts and make an objective decision. Ask yourself "How does this affect the outcome?" - Sean and Kyle use the example of making the decision to sit down in a wheelchair or purchase an adaptive van.  They talk about the face that these decisions do not change h