Two Disabled Dudes

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.

Despite being visually impaired, Dave Wilkinson has accomplished remarkable feats, including marathons and Ironman competitions. His next ambitious goal: the Race Across America, a 3,000-mile non-stop bike race. Dave shares his journey, emphasizing the importance of trust between guide and athlete, and how he overcomes challenges. His story is a testament to pushing boundaries and embracing life's adventures, even when tinged with danger. Tune in for a powerful and motivational conversation that reminds us that anything is possible with the right mindset and determination.

Links and Resources:

• Learn more and support Team Speedy Turtle

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.

Join the dudes as they dive into a candid conversation about the complexities of commitment, relationships, and disability. They explore how disability can introduce uncertainty and self-doubt into one's pursuit of a long-term partnership. Discover valuable insights and reflections on the role of societal norms, personal growth, and human nature in shaping our desires for companionship. Tune in to gain a deeper understanding of the challenges and nuances surrounding commitment.

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.

Dr. Tyler Sexton is the Medical Director of pediatrics at Singing River Health System in Mississippi. He's also an international motivational speaker and author, and he has cerebral palsy.

Dr. Sexton discusses his journey and how his disability motivated him to become a pediatrician. He shares his early struggles, as he was born prematurely and given a grim prognosis, but he defied the odds through 18 surgeries, months of hospital care, and determination.

As a doctor with a disability, Dr. Sexton talks about how he can uniquely relate to his patients, offering them understanding and compassion that able-bodied doctors may not provide. He mentions that while some patients have initially hesitated to be treated by him because of his disability, he has been able to win them over with his expertise and care.

Dr. Sexton's parents encouraged him to dream big and not let his disability define him. He also advocates for radical authenticity and resilience, reminding everyone that we all face challenges and can choose to live in excellence.

Links and Resources:

• Dr. Sexton's Website
• Dr. Sexton's Book: God Bless These Little Legs
• Dr. Sexton's Book: No Such Thing as Can't

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.

To kick off the inaugural Film Festival at the BIO International Conference, we had the opportunity to moderate a panel about using podcasts, video, and other media to help center the patient voice in the drug development process. 

This panel featured three top advocates who regularly use media to amplify the patient voice:

• Daniel DeFabio, Co-Founder, The DISORDER Channel
• Michelle Rivas, Senior Manager, Communications, Horizon Therapeutics
• Eve Dryer, Vice president, Patient Advocacy, Travere Therapeutics

We learned a lot from these fellow advocates and we hope you do too!

A few years ago, Kyle and Sean both had experiences with someone else judging them for their disability.  Whether it was fair or not, both dudes took offense to the way they were approached.  Today they review those situations and reevaluate their reactions.  Would they react differently today? Listen to find out.

Links and resources:

2DD Episode 114 - Don't Judge A Dude By His Wheelchair

rideATAXIA Philadelphia - Sunday, October 8

Ever have those moments where you reflect on the past and think to yourself, “Well, 20 years ago…” and immediately realize that the memory you’re recalling was actually 30 years ago? In other words, time flies and we’re all getting old.

In this episode, The Dudes discuss pros and cons of how the world has changed over their lifetime, especially highlighting the global connectedness that the internet, smart phones, and social media has allowed. Perhaps such ability to connect with others has been the most significant game changer for the rare disease community in the last 20 (or 30) years?

Links and resources:

• Sean's column - How improved global connectedness benefits the rare disease community