This is the first episode ever that does not feature both Dudes! Sean is joined by our friend and guest host, Effie Parks from the Once Upon A Gene Podcast.  Effie produces short “Effisodes” on her show and one in particular grabbed Sean’s attention. With Kyle on the road, Effie agreed to help The Dudes with this episode and takes Kyle's place, in addition to allowing us to share one of her Effisodes.

In this Episode:

• How Effie got into podcasting. 
• You Got This, Mental Health featuring Shelley Bowen - Grief is a process. Everyone grieves differently.  It's ok to figure it out as you go.  Listen to hear Shelley's wisdom.
• In an Effisode, Effie talks about a touching experience at a recent Birthday Party.
• Thank you notes - Rodney Samaco, Ph.D., PT with Dri

Links and Resources:

• Barth Syndrome Foundation

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.

According to an article Kyle read on Forbes.com, "Inspiration Porn provides kind of superficial pleasure and gratification for the viewer, while objectifying , often harming the mostly passive subjects being looked at.”  Sounds pretty bad.  Find out what the Dudes think.

In this Episode:

• Kyle gets Door Dash delivered to the wrong address...again.
• You Got This, Mental Health featuring Kate Walker - Many of us ask ourselves "why me?" when thinking about our rare disease.  Kate helps us explore why we should brake that habit.
• The Dudes discuss how they might be perpetuating the idea of Inspiration Porn by benefiting from the attention that comes from having a disability.
• Thank you notes - A grocery store-apple-helper and a Chipotle cashier.

Links and Resources:

• Matthew LaFleur's Article: The importance of resilience and other lessons from my diagnosis
• Stella Young's TEDx Talk: I'm not your inspiration thank you very much
• How to Avoid "Inspiration Porn" by Andrew Pulrang for Forbes.com

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.

As Sean says: Government is HARD - especially when trying to navigate the Social Security Disability system.  That’s why we talk to Spencer Bishins who worked in the Social Security Administration for years and shares his insights with us.  Spencer just scratches the surface with us-  but you can find all the details in his book: Social Security Disability Revealed - Why it’s so hard to access benefits and what you can do about it.

In this Episode:

• Sean explains how StorQuest made it so easy for him to never do business with them again.
• You Got This, Mental Health featuring Lara Bloom - There are many challenges living with a disability.  On top of the physical challenges, people with invisible disabilities often have a hard time getting strangers or even doctors to believe them - Lara shares her perspective and how the Ehler's Danlos Society is addressing the issue.
• Spencer Bishins gives us some insight into why it's so hard to access Social Security Disability Benefits.
• Thank you notes - Two nice people.

Links and Resources:

• Bishins Publishing
• Ehlers-Danlos Society

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 aretrademarks of Reata Pharmaceuticals, Inc.

Maneuvering a wheelchair presents many situations that are much different than a person who uses their legs to get around.  When you offer to help someone in a wheelchair, here are a few things you should keep in mind.

In this Episode:

• Kyle checks out a new section of bike trail so Sean wants to make sure he does it safely.
• You Got This, Mental Health featuring Kate Walker - Depression is common for people living with Rare Disease - Kate shares a bit of her experience dealing with depression.
• Sean brings his "Top Ten" list of annoyances while traveling in a wheelchair - constructive feedback for those who want to help.
• Thank you notes - The people who make bike trails happen, and Sean's editors at Friedreich's Ataxia News

Links and Resources:

• Depression and anxiety in patients with different rare chronic diseases: A cross-sectional study

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.

For Rare Disease Day 2023, we were honored to moderate a virtual panel with our friends at Jett Foundation.  The theme was Thriving with Duchenne; a Rare Disease Day event focused on mental health and anxiety and it features a diverse panel of patients, caregivers, a life coach, and a Psychologist. 

Duchenne Muscular Dystrophy (DMD) affects mostly males and causes progressive muscle damage in the entire body. It is the most common fatal pediatric disorder. 

Duchenne has no cure. But the individuals in this episode are determined to Thrive with Duchenne.

In this Episode:

• You Got This, Mental Health - Our friend Shelley Bowen (Ep 140) takes us through her experience having the hard talk about death.
• The Dudes are quite uncomfortable talking about SEX, especially sex and disability.  So we welcome Jennie Williams from Enhance the UK to introduce the topic.
• Thank you notes - Kyle's Condo Community - Old Forge Crossing, and a backwards thank you for StorQuest.

This episode happens to contain two topics that we’ve never addressed in depth.  This is because we never had the words or the right people to guide us. Our feature conversation is with @enhancetheuk Founder & CEO, Jennie Williams who leads us on a deep dive into the world of sex and how it matters amongst disabled and nondisabled persons. Shelley Bowen also joins us again for a short chat on preparing for the tough conversation of advanced directives. Ep210 is fully packed, buckle up!

Links and Resources:

• Undressing Disability
• Barth Syndrome Foundation

In this Episode:

• You Got This, Mental Health - Feeling seen and heard.  Some of the responsibilty is on you.
• 
  
• Can a single person make a difference? The amazing story of the first approved drug for Friedreich's ataxia (FA)
• 
  
• Thank you notes - Reata Pharmmaceuticals, and Kyle's landlord at work.

As the story goes, in an effort to do whatever she could for her son who lives with Friedreich's ataxia (FA), a concerned mother connected a few important dots about science and the pharmaceutical industry.  When she decided to make a phone call to the Friedreich's Ataxia Research Alliance (FARA), she started a series of actions and events that eventually led to the approval of the first treatment for FA, SKYCLARYS.  Listen for the details.

Links and Resources:

• Announcement: First Medication to Treat Friedreich's Ataxia Approved on Rare Disease Day! 

In this Episode:

• The very first treatment for Friedreich's ataxia (FA) was approved last Tuesday!  A deep dive into this next week.
• You Got This, Mental Health - 
• There's not one "right" direction in life.  Keep moving forward and making progress.
• Thank you notes - Clinical Team at Children's Hospital of Philadelphia and Sean's Personal Barista 

It’s easy to second guess our choices and doubt our decisions. Although there may be more efficient steps to take or faster directions to follow to get to our destination, is there ever a wrong way? Hear The Dudes share their experiences and perspectives.

Links and Resources:

• Sean's Column: Moving in a Positive Direction | Living With FA Reinforces My Commitment to Making Progress

In this Episode:

• How Kyle ended up at Cracker Barrell for chicken fried steak at lunchtime
• You Got This, Mental Health featuring Andra Stratton - Managing expectations for drug development
• Asking for help is complicated.  The Dudes talk through some of the different scenarios that make it so.
• Thank you notes - Gail Moore

We all need help sometimes.  However asking for, and receiving help are not straight forward.  Sometimes our pride gets in the way of other people trying to offer help. 

Links and Resources:

• Asking for help is so damn hard.  Here's how to make it easier

This episode brought to you in part by Horizon Therapeutics.

In honor of Rare Disease Day, the #RAREis Global Advocate Grant program is awarding 50 grants totaling $250,000 to global patient advocacy organizations working to support the community. Learn more and apply at rareiscommunity.com/grant

In this Episode:

• Dr. Kyle gives his advice.
• You Got This, Mental Health - Self Image
• Audrey Greenberg is the CBO of Discovery Labs and the Center for Breakthrough Medicines.  She talks with The Dudes about how authenticity can benefit all of us.
• Thank you notes - Bill at Meineke & Taylor Wohler

When you come as you are, others feel free to bring their authentic selves to the conversation.  This is one of the many things we took away from our conversation with Audrey Greenberg, CBO of the Center for Breakthrough Medicines. Greenberg manages the 1.6 million-square-foot campus at the Discovery Labs King of Prussia, PA one of the largest facilities for life sciences and technology in the world.

Links and Resources:

• Mental Health - Self Image

This episode brought to you in part by Horizon Therapeutics.

In honor of Rare Disease Day, the #RAREis Global Advocate Grant program is awarding 50 grants totaling $250,000 to global patient advocacy organizations working to support the community. Learn more and apply at rareiscommunity.com/grant