Two Disabled Dudes Podcast

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 199: Episode 040 with Arash Bayatmakou CanDo’s Keto Krisp. Listen to ep198 for a discount code from the Founder - Adam Bremen.

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 fans. You can try the delicious bars too, by visiting tastecando.com and entering ADAMCANDO at checkout for your discount. Adam credits his friend Jesse Billauer for inspiring him to get in shape. Check out Jesse's adaptive surfing and other events at liferollson.org.

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 9th fundraising title for rideATAXIA Dallas. 

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 deep conversation :-) This episode was brought to you in part by Horizon Therapeutics. In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.

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 airline. You gotta know your rights and you gotta believe that you are just as important as the person next to you.  Take it from Mary.     This episode was brought to you in part by Horizon Therapeutics. In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.

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 unconsciously.   Through their discussion, the Dudes challenge each other to be intentional about setting priorities to help make decisions that serve those priorities. In thank you notes, Sean thanks Canva for their support of Non Profits. Kyle thanks Chris Farley for all the laughs. Enjoy! This episode is brought to you in part by Horizon Therapeutics. In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info

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 epilepsy syndrome that develops in young children and often leads to lifelong disability. The LGS Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awarenesss, and family support. This Episode is brought to you in part by Horizon Therapeutics. In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.

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 means starting a nonprotit organization to advance science toward a treatment and cure.  Patients, parents and friends run these organizations with little to no budget or training.  These heroic efforts make slow progress while testing the resolve of their leaders who are constantly operating at the edge of their emotional, and physical capacity. The CZI Rare as One Program provides funding and training to build or expand research networks as well as increase organizational infrastructure to support this important work. The program started in 2019 and this was the first in person meeting of the 50 grantee organizati

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 group. Sound from zapsplat.com.

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, visit www.rideataxia.org For team de:terminence, visit www.determinence.com To follow Kyle's blog and GPS of his current adventure, "Ride Wild," visit: www.KyleABryant.com    

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 individuals affected by Duchenne muscular dystrophy and other neuromuscular disorders. Jett Foundation partners with individuals and families through empowering educational programming, transformational direct service experiences, and by accelerating the development of life-changing treatments.

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 the needs of patients while advancing treatments and services within the for-profit arena. Amy joins us for a casual conversation touching on the Niners vs. Rams, motherhood, and her work at Catalyst Pharmaceuticals.