show episodes
 
The 2DD podcast is about setting sights beyond the challenges in your life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster, and practical thoughts that you can apply to your life with this podcast. Hosts Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities. However both dudes have completed several long distance b ...
 
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show series
 
There's a common debate going on in many of our heads when it comes to committments. Whether it's meeting a friend for coffee, or going to a concert with a group, we have to decide if we can make it. If we decide not to go or even worse, cancel at the last minute, is it for a legit reason or are we just making an excuse? Ultimately that's for you t…
 
Making the transition to independence is difficult to begin with. It is further complicated if you have a rare disease. Lauren Riggs joins The Dudes to talk about her recent experience moving away from home to go to school at University of Oklahoma and then grad school in Texas. Lauren lives with Friedreich's ataxia (FA). Her own journey with acces…
 
When Katie Lloyd's son was diagnosed with a rare, lifethreatning disease, she began to notice that people around her reacting to the news in some unintentionallyinsensitive ways. When we witness someone going through a difficult situation, our first impulse is to say something encouraging: "Chin up!" "The Sun will come out tomorrow". However, respo…
 
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 - Wh…
 
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…
 
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…
 
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…
 
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 sit…
 
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…
 
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 se…
 
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…
 
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 h…
 
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 dete…
 
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 yo…
 
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.By Google's Project Relate
 
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 F…
 
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…
 
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 tr…
 
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 Pharma…
 
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 determ…
 
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.…
 
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 subscribe…
 
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 conve…
 
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.By Stan Crooke
 
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…
 
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 o…
 
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 gro…
 
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 p…
 
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 geneti…
 
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…
 
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 inte…
 
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 ap…
 
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