Two Disabled Dudes

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.
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• Can a single person make a difference? The amazing story of the first approved drug for Friedreich's ataxia (FA)
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• 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

In this Episode:

• Almost a year later, Kyle gives an update on his wheelchair drama.
• You Got This, Mental Health featuring Andra Stratton - Managing our expectations for Drug Development.
• The Dateability App - Designed by someone with a disability for the disabled community.
• Thank you notes - Dr. Anna Stepanova & Aaron Fisher

After learning of her own disability and chronic illness, Jacqueline was exposed to a persistent ableist mentality and she wasn’t a fan. This showed up a lot in her dating life and she couldn’t find a dating app that she felt safe using and that helped her meet people that understood disability. So, she teamed up with her sister and they launched The Dateability App.

Links and Resources:

• Mental Health
• Uplifting Athletes

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

Welcome to Season 9!

Dolly Parton wants to see more kindness in 2023. However if you ask Sean, kindness is not the issue - it's awareness of others around you. It will make sense after you listen.

Sean's column on the subject: No Good Excuse

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

There's a common debate going on in many of our heads when it comes to committments.  Whether it's meeting a friend for coffee, or going to a concert with a group, we have to decide if we can make it.  If we decide not to go or even worse, cancel at the last minute, is it for a legit reason or are we just making an excuse?  Ultimately that's for you to decide for yourself...

Resources mentioned in this episode:

• Intro post for Sean's column: No Good Excuse
• 2DD episode 178 - Man Turning Into Stone - Joe Sooch

This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.

The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts

Making the transition to independence is difficult to begin with. It is further complicated if you have a rare disease. Lauren Riggs joins The Dudes to talk about her recent experience moving away from home to go to school at University of Oklahoma and then grad school in Texas. Lauren lives with Friedreich's ataxia (FA). Her own journey with accessibility leads her to facilitate accessibility for others.

During this episode, Lauren explains the Spoon Theory which many people living with rare or chronic disease can relate to.

This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.

The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts