Two Disabled Dudes

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 organizations that make up the Rare as One Network. It was an emotional time as the grantees continued to learn and laugh together in 3D instead of through a screen. We had the opportunity to moderate the closing session to talk about the incredible progress to date and the future of the program with three leaders of Rare as One, Vice President, Science in Society at CZI, Tania Simoncelli Rare as One Program Manager, Heidi Bjornson-Pennell Rare as One Program Associate, Andra Stratton Enjoy the conversation.

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.

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?"

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 in clinical trials. When we were presented with the opportunity to moderate a panel of people who either participated in gene therapy studies or had extensive knowledge to share on this topic, we jumped on it! AVROBIO’s vision is to bring personalized gene therapy to the world. They aim to prevent, halt or reverse disease throughout the body with a single dose of gene therapy designed to drive durable expression of therapeutic protein, even in hard-to-reach tissues and organs including brain, muscle, and bone. AVROBIO’s ex vivo lentiviral gene therapy pipeline includes clinical programs in Fabry disease, Gaucher disease type 1 and cystinosis, as well as preclinical programs in Hunter syndrome, Gaucher disease type 3 and Pompe disease. For additional information, visit www.avrobio.com

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 tissue. Connective tissue helps to hold the body’s cells, organs, and tissues together and also helps to control how the body grows and develops. There are several disorders related to Marfan that cause people to struggle with the same or similar physical problems, and anyone affected by these conditions needs an early and accurate diagnosis. Please visit www.marfan.org for more information about Marfan, Loeys Dietz, and Vascular Ehlers Danlos Syndrome. Listen as Leah, Adrianna, Kristy and Micah share openly about their vastly different experiences but also their shared and wildly optimistic, fulfilling lives, despite the challenges and unpredictability of their conditions.

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 value in it.

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 the world around you as Sean tries to wrap his head around airplane accessibility. Links: Anthony's Interview for The Playability Initiative. Anthony on social media: Twitter LinkedIn Connect with Anthony and others: https://ourodyssey.org/

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://ntsad.org

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!

Sean just turned 40. Happy Birthday Sean! Kyle turns 40 in a few months. This milestone brings a question into focus: What if the treatment or cure for FA doesn't come in our lifetime. Listen for thoughts from the dudes.