Two Disabled Dudes

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
• Newsworthy music courtesy of Zapsplat.com

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

Links and Resources:

• Newsworthy music courtesy of Zapsplat.com

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

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

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

Sean and Kyle engage in a heartfelt conversation with Caley Caroll, a mother, caregiver, and fierce advocate for her son Whitten John and his health challenges. Whitten John was diagnosed with Diabetes Insipidus and Langerhans Cell Histiocytosis, two rare diseases. Caley shares the emotional journey of receiving the diagnoses, the difficulties of caregiving, and the impact on her family. She recounts the challenges of treatments, including chemotherapy, and the importance of gratitude throughout the process. The conversation touches on the effects on her other children and the transformation of relationships within the family. Caley emphasizes the need for intuition and advocacy in navigating the complexities of healthcare. Despite the hardships, there's a sense of gratitude and celebration in the present.

Links & Resources

• Caley's Facebook
• Caley's YouTube
• Caley's Twitter/X
• Caley's Instagram 

This episode brought to you in part by Reata Pharmaceuticals.

Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

Zach Wichter joins us to discuss the massive, yet not-so-commonly known incidents of damage to mobility devices caused by airlines. Zach is a consumer travel reporter for USA Today and focuses much of his writing on air travel specifically. Zach discusses his project where he has been tracking incidents of airlines damaging mobility devices throughout 2023, working to put names and faces, through storytelling, to the 10,000-15,000 devices that airlines damage each year. He highlights the significant impact of such damage on disabled travelers and their families, emphasizing the human aspect behind the statistics. We discuss potential solutions, efforts of improvement being made, and of course, the ongoing need for advocating in order to keep the ball rolling towards improvement.

Zach’s dedication to sharing these stories and raising awareness for this issue is evident throughout the episode and he encourages listeners to share their stories and contribute to the ongoing dialogue about accessibility in air travel.

Links & Resources

• Read one of Zach's stories and submit your own: Flyer 'just in shock' after watching wheelchair fall off baggage belt from a United flight 

This episode brought to you in part by Reata Pharmaceuticals.

Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

The Dudes recently had the privilege to host a virtual panel for Jett Foundation's celebration of World Duchenne Awareness Day 2023.  This panel includes Patients, Caregivers, and Medical Professionals.  Some of the topics discussed include:

• Understanding Manifesting Carriers
• Common Misconceptions About Female Carriers
• Challenges of Transitioning from Pediatric to Adult Care
• Geographic Challenges and Access to Care
• The Role of Virtual Visits
• Tips for Navigating Healthcare Challenges

We are continuously impressed with the DMD Community's drive to help each other navigate challenging situations.  Thank you, Jett Foundation, for allowing us to be part of this conversation.

Links & Resources

• Find out More: Jett Foundation

In this episode, Kyle and Sean discuss various incidents that prompt them to contemplate the responsibilities and expectations within the disabled community.  The dudes discuss whether people with disabilities sometimes misuse their rights or privileges, particularly in situations like pre-boarding on flights. They explore that every right implies a responsibility and how some actions might reflect poorly on the entire community.

Links & Resources

• Sean's Article: Living With A Disability Heightens My Sense Of Responsibility
• Register Today: Friedreich's ataxia News Virtual Event, Nov 1
• Check it out: Aquila Fitness

This episode brought to you in part by Reata Pharmaceuticals.

Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

Episode 232 welcomes Matt LaFleur who shares his journey as a rare disease patient with Friedreich's ataxia (FA). Matt talks about how he transitioned from viewing himself as a victim of FA to seeing himself as a hero in his own story. He describes the impact of the diagnosis as an "inciting event" and highlights how the hero's journey is not just a linear path but a cyclical one. Matt emphasizes the importance of taking responsibility and finding little victories along the way, despite the ongoing presence of FA. The discussion touches on various aspects of life with a rare disease, relationships, and personal growth. Matt also shares his experience of presenting at the FA Symposium and how he and his co-presenters used mythical characters to relate their topics to the hero's journey concept. The episode offers a unique perspective on finding inspiration and resilience in the face of adversity.

Links & Resources

• Register Today: Friedreich's ataxia News Virtual Event, Nov 1
• Read: Matt's Column
• Watch: FARA FA Symposium Recordings 

This episode brought to you in part by Reata Pharmaceuticals.

Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.