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 bike rides including “The World’s Toughest Bike Race” - Race Across America (RAAM). Their RAAM journey is the subject of an award winning documentary called The Ataxian. Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch.
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242 - Dave Lynch: 27 Years, 700+ Patients, and the First Treatment
Dave (Dr. Lynch), a seasoned clinician and researcher specializing in Friedreich's ataxia (FA), sheds light on his nearly three-decade journey at the forefront of FA care. Throughout the conversation, Dave emphasizes the indispensable role of patient participation in research, underscoring the collaborative spirit driving advancements in FA drug development.
Also in this episode:
Sean's Sleep-talking escapades. Kyle Finally took his road test for his driver's license. Newsworthy: Light Up For Rare comes to a monument near you! Links and Resources:
Light Up For Rare
241 - Feeling Helpless? Here Are 4 Ways To Help
For Rare Disease Patients, the drug development process can feel huge and overwhelming. It seems like everyone has a role to play; Doctors, researchers, advocacy organizations, pharma industry...we can see how they all fit in the process. What about the patient's role? Listen as The Dudes discuss 4 of the many ways patients can have an impact.
Also in this episode:
Ever received a mysterious text from an unknown number? Kyle talks about receiving a letter regarding his DMV situation and the challenges he faces in navigating bureaucratic systems. Newsworthy from Esquire: Four Years After a Crash Left Him Paralyzed, BMX Star Paul Basagoitia Enjoys Riding More Than Ever Thank you notes: Sean - A curious coworker. Kyle - Mike and Diane Bryant (Dad and Mom) Links and Resources:
Any One of Us documentary trailer Paul Basagotia Instagram
240 - Adapting to Life's Curveballs
Adapting to changes is a big part of life for everyone. Listen as The Dudes discuss their approach to adapting.
In this episode:
Kyle uses a voided ID to get past TSA on his way to North Carolina and back. Newsworthy from Instagram: Young man paralyzed from the shoulders down after a spinal cord injury in 2020 The Dudes get into a discussion about adaptation strategies for living with disabilities, emphasizing the importance of planning ahead and being flexible. They also reflect on their upcoming changes to the podcast production schedule, aiming for a more manageable approach. Thank you notes: Sean: Football season's effect on crowds at the gym. Kyle's friend Joy, for planning an awesome game day party
239 - Season Premier - Are You a Doer or a Talker?
Listener Brian lets the Dudes know that Kyle has in fact been driving illegally for 10 years. Does Kyle have a plan to address this dilema?
In the Season 11 premiere, Kyle and Sean dive into the challenges and triumphs of pursuing dreams, overcoming fears, and embracing new opportunities. The Dudes also discuss the power of setting goals, the fear of failure, and the importance of discipline in achieving success. With inspiring stories and candid reflections, this episode offers listeners a blend of motivation, encouragement, and real-life insights.
Links and resources:
Benedict Cumberbatch: "Do" Aaron Wheelz Instagram Newsworthy music courtesy of Zapsplat.com
238 - Season Finale - The Dynamics of Friendship
In episode 238, The Dudes delve into the theme of friendship, highlighting the significance of chosen family and exploring the dynamics of their own unique bond. They draw inspiration from questions curated by MindPath Health, leading to an unscripted and genuine conversation. From childhood influences like movies to bucket list aspirations, The Dudes share personal stories, providing insight into their lives. The episode also touches on life's challenges, frustrations, and coping mechanisms, offering a candid look. In the spirit of National Family Caregivers Month, Sean and Kyle discuss how they prefer to receive care, emphasizing the importance of understanding and genuine support. The episode weaves together laughter, reflection, and wisdom, creating a connection with listeners through shared experiences and open conversation.
The Dudes will be back with new episodes in February. In the meantime, check out past episodes.
Links and Resources
Mindpath Health - 80 fun questions to ask your friends to get to know them on a deeper level
237 - The Vital Role of Caregivers in Rare Disease Advocacy
We are thrilled to have Effie Parks and Daniel DeFabio in this powerful episode! Together, we discuss the pivotal role of the caregiver’s voice in the realm of healthcare, particularly in the context of rare disease. Our dialogue revolves around the essential role of caregivers, whether they are parents, aunts, uncles, or other family members, in advocating for those who may not have the ability to communicate at all, as often seen in the case of children with rare diseases.
Effie & Daniel help us understand why the distinction between patient and caregiver voice is crucial. Caregivers often become the primary advocates for individuals, especially children, who may have limited communication abilities, so caregivers must be included in the entire care process.
Our conversation delves into the challenges faced by caregivers, particularly in the context of rare diseases, where caregiving responsibilities extend beyond traditional roles. Effie & Daniel touch on the complexities of balancing the roles of a parent and a caregiver. They share personal insights into the challenges of finding balance between urgent caregiving needs and the desire to engage in typical parenting activities. Hear us discuss the emotional and mental toll on caregivers and stress the importance of acknowledging both aspects of their identity.
Links and Resources:
Once Upon a Gene The Disorder Channel Global Genes
Great listen for anyone dealing with a disability
I was able to meet Sean in Vegas at the annual ataxia conference this month for the National Ataxia Foundation. Let me just say that he is super nice. I love Kyle and Sean’s banter.
The guests they they have on are relevant and knowledgeable I’ll learn a lot from this podcast!
So glad I found this
My grandson was recently diagnosed with FA. In my search for any and all information, I stumbled on this podcast. I have binge listened to years of episodes in the last few weeks, so Kyle and Sean now feel like family. I am so thankful to have found this podcast. It has been a tremendous source of information and hope.
Kyle and Sean are rock stars in my book. I love listening to their conversations and it seems I always learn something profound to take away.
A good listen! Thanks! Colleen