Two Disabled Dudes

We have been doing this for 6 years - we're still friends, and we hope a few people have enjoyed listening.  Let's celebrate episode 200 with a little reminiscing, a few old snippets, and a brief look at the future of the show. Some of our favorite epispdes that we mentioned: 055 - Facing the Realities of Physical Changes 073 - Jeff Bell Part 1 - What is OCD? Jeff's cause: The A2A Alliance | Adver...

A guiding principle Sean has adopted from his employer applies to every area of life - Respect, Appreciate, and Value Everyone, a.k.a RAVE. As a Fortune 100 Best Companies to Work For , Nugget Markets, Inc. is careful with the culture they foster and honor. In this episode, Sean shares a glimpse into this particular core value that is worth everyone’s consideration. A couple of mentions in Episode...

Adam Bremen is the co-founder of CanDo , the maker of the #1 Keto bar on Amazon, Keto Krisp. Despite living with Cerebral Palsy and having experienced much hardship and loss in his life, Adam is one of the most positive and genuine people we've ever had on the show. The success of his brand is not surprising given his outlook on life and his support for others. We've tried Keto Krisp and we're fan...

Rare Disease is ever present and relentless. Sometimes we wish we could push the pause button and live an able bodied life for a little while. Kendall harvey writes about this struggle in her recent column for Friedreich's Ataxia News.  The article is called FA Progression No Longer Has Total Contr Olver My Life and she talks about it with The Dudes. Follow Kendall on Instagram as she chases her 9...

Sean is overwhelmed at the moment.  He has too much on his plate and life is chaotic.  Kyle's plate is pretty full too.  However there's always something to talk about. Listen as the dudes talk about being over subscribed and possible strategies to avoid this situation.

The biggest obstacle to treating patients with overlooked diseases isn’t finding potential treatments — it’s funding them. Alok Tayi Join the Dudes as they get a glimpse into the world of Cryptocurrency and discover how patient communities can have more control of research direction as they chat with Vibe Bio CEO, Alok Tayi.

Sean loves to play the game Risk online with people he doesn't know.  When someone attacks him, rather than focusing on trying to win the game, his strategy is sidetracked by the need to destroy this person who injured him.  Until one day he realized it was better to just play the game and not take attacks personally.  This concept relates to many situations for The Dudes.  Listen and enjoy this d...

Kyle's Wheelchair was damaged on an American Airlines flight in April.  It is now September and it is just now getting resolved.   While working his way through the situation, Kyle phoned a friend, Mary Caruso who provided advice and encouragement about the process and how to conduct oneself while advocating for what you need.  Ultimately Mary's advice lead to a reimbursement check from the airlin...

In this week's round of Guess What, both dudes came out winners.  Kyle won because Sean gave it away.  Sean won on a technicality.   Then, Kyle introduced a topic based on his recent cycling adventure: We are constantly faced with decisions that affect the outcome of our lives.  Our response to these decisions is often determined by the priorities we set for ourselves either consciously or unconsc...

Tracy Dixon Salazar is a mother, scientist, and Executive Director of the Lennox-Gasteau Syndrome Foundation. "I don't think we should be writing off Rare disease Patients and assigning them death sentences anymore. I think we should be rolling up our sleeves and doing a covid like movement to actually start saving some people's brains" Tracy Dixon-Salazar Lennox-Gastaut Syndrome (LGS) is a severe...

There are so many things in life that are out of our control but our reaction to them is always in our control.

At the beginning of June we were invited to moderate a panel at the Chan Zuckerberg Initiative Rare as One Annual Meeting in San Diego, CA. Most of the time diagnosis of a rare disease comes out of the blue and includes life altering, and life shortening symptoms.  The effect of which leave familiy members and friends to manage care and figure out how they might solve the problem.  Many times this...

Is Kyle's dad trying to kill him? A new season, a new segment: Guess What? Plus: Living with a disability can be isolating.  Especially among able bodied friends.  However like most things in life it's about how we react.  Whether that's communication about the situation or being proactive and finding more accessible activities, our reaction will determine our experience and the ecperience of the...

Kyle just finished a crazy cycling adventure in the backwoods of Montana and Idaho.  12 days in, Kyle called Sean with some insights from the journey which we can all apply to our lives every day.  Sean's analysis may hit home with you.

The Dudes take 8 weeks off from publishing episodes between seasons. However, they stay pretty busy with their day jobs, extracurricular activities, and even this podcast. With the start of Season 8, this episode features a conversation between Kyle & Sean catching up on the busy summer they've had. The Dudes mention a few things they'd love for you to check out: For rideATAXIA events and impact,...

Update on Google's speech recognition app for people with speech impairments. Plus, a discussion about how acknowledgement of the progression of disease affects planning in life.  Once again, talking about the tough stuff may help us along in our journey with any health challenge.

Living beyond circumstancemeand finding ways to thrive with whatever hand you're dealt.  In this episode we hear from 4 young men who are thriving in their lives with Duchenne Muscular Dystrophy. Jett Foundation put together this panel as their community joined in the recognition of Rare Disease Day on the last day in February. The mission at Jett Foundation is to extend and enrich the lives of in...

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. 

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.

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.

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 th...

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 giv...

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.