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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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DBTD

A.J.Martens

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Photographer AJ Martens and blogger and former Miss wheelchair Fl 2010 Shannon Horne will bring a unique and informative guest to each episode of don't burn the day otherwise known as DBTD. The host of the show has not let the diagnosis of cerebral palsy slow them down from what it is they want to pursue and in this podcast, you will find out many of the ways that they have succeeded In life. We invite you to join our Patreon community by going to www.patreon.com/dbtd The DBTD team thanks ev ...
 
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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…
 
In this episode, AJ sits down with Adrianne Mascho from Feeldom to talk about the new products and the feedback that the company has received over the past year. Please go to https://www.feeldomlife.com/ and use code 1life2live at checkout to get 10% off your order. Also, don't forget to check us out on our social media platforms and Like, Share, a…
 
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…
 
we are often reminded when it is too late that relationships are truly what matters and should be treated like it was something that is living in a fast-paced life we often get caught up in our own situations and forget to slow down and value those true relationships I hope this episode reminds someone to call whoever you may not have been in conta…
 
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…
 
In this episode, the team gives our thoughts on the life and work of the disability icon and trailblazer Auti Angel. Plus details on upcoming events such as the Family Cafe www.familycafe.net May 27-29 Abilities Expo www.abilitiesexpo.com https://www.feeldomlife.com/discount/... Use code: 1LIFE2LIVE for 15% off any item https://wyattwear.com/ Use c…
 
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…
 
On this episode of DBTD, AJ is joined by Alicia Dorough Campiglia to talk about the last year of her life since overcoming a horrific motorcycle accident on April 10th, 2021. In the episode, she discusses how she engages with young children who ask questions and also o how her working with people with disabilities at a young age helped her during t…
 
In this episode, the DBTD team sits back and chats with AJ's younger brother and roommate KC Adams. https://www.feeldomlife.com/discount/... Use code: 1LIFE2LIVE for 15% off any item https://wyattwear.com/ Use code: DBTD10 for 10% off your entire order https://friendlyshoes.com/ Use code: frienz4lyfe for 10% off your entire order https://pattiandri…
 
in this episode the DBTD team meets with Adriene Mascho representative of Feeldom to discuss some new things that they have going on such as Valentine's Day sale where you can get 50% off their merchandise on their Amazon store as well as use the code 1life2live at checkout at feeldomlife.com you can catch the Feeldom team at the abilities expo in …
 
in this episode, AJ discusses his thoughts on the Mental Health Day 2022 that was hosted by agencies all across Vermont but it was done through Zoom so anyone could attend this informative event He also gives an update on future plans for the team and his feelings on winter and its effects on disabilities. For more info go to National Alliance On M…
 
In the first episode of a brand new season of Don't Burn The Day the team gives tips for finding self-love within the disabled community and tips on being kind to yourself so that you can help in your segment of the world in which you live but you cant give to others what you don't have so we break down some daily routines that we think may bring y…
 
in this episode DBTD is joined by Mason Hall Morris as we give advocates ideas on how they can make an impact in 2022. Mason shares her journey as an activist Mason's Instagram: https://www.instagram.com/mhmorris/ Join us December 11th for our Virtual Holiday Bonanza at the link below: https://www.dbtdmedia.com/virtual-hol... https://wyattwear.com/…
 
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.…
 
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