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.

In this conversation, Sean and Kyle discuss the concept of advocacy and its various forms. They reflect on their experiences with advocacy, from meeting with legislators for rare disease-related issues to everyday interactions. They emphasize the importance of not staying silent and making one's voice heard, whether it's through legislative meetings, social media, or personal interactions. They also acknowledge the power of raising awareness and challenging perceptions of disability by expressing yourself in whatever way you choose.

Links & Resources

• Register Today: Friedreich's ataxia News Virtual Event, Nov 1
• Watch: Joe Sooch's YouTube Channel

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.

In this interview, podcast hosts Bill Nowicki and Laura Graham discuss their podcast, "Navigating Mental Illness: Parent Stories."

They talk about their personal journeys and experiences with mental illness in their families, emphasizing the importance of storytelling and providing a platform for parents to share their stories. The podcast aims to offer support, resources, and hope to parents who are dealing with the challenges of mental illness in their children. Bill and Laura also highlight the power of vulnerability and listening in building connections and healing.

They encourage listeners to reach out and share their own stories on their podcast. You can find their podcast on various platforms and connect with them on their website below.

Links & Resources

•  Bill & Laura's podcast and website

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.

Keeping an exercise routine is difficult for everyone.  Add a rare disease in the mix and there are even more difficulties.  The Dudes talk about their motivations, and the difference between motivation and discipline.

Also: 

• Hear Sean's most recent travel story about his lost walker on Southwest Airlines. This story was recently featured in USA Today.
• Quote of the week: "Discipline is choosing between what you want now and what you want most." - Abraham Lincoln

Links and Resources:

• Sean's Travel Story in USA Today
• Stella Young's TED Talk

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.

Advancement is about learning and implementing new ideas and techniques.  In August, The Dudes attended the Podcast Movement conference in Denver, CO.  They learned a lot about the podcast industry and how to improve the show - and a few things that apply to their everyday mindset.

Links and Resources:

• Podcast Movement

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.