221 -Disability & Fun Can Coexist

08/07/23 • 30 min

Season 10 kicks off with ep221. Life is constantly changing, especially when living with progressive rare disease. Both Kyle & Sean are living with Friedreich’s ataxia and their abilities are changing often. Recently, Sean hit a mini-golf course and although it wasn’t what he remembers as a teenager, he still found ways to have fun. Ep221 reminds us that “fun” is what you make of it and how you define it.

Links and Resources:

Sean's Column - Living with Friedreich's ataxia doesn't mean I can't have fun

Links and Resources:

Sean's Column - Living with Friedreich's ataxia doesn't mean I can't have fun

Previous Episode

220 - Season Finale - How Much is Too Much?

For the last episode in Season 9, we want you to know how much we appreciate you listening to this show. This season has been especially trying as we unknowingly doubled our workload at the beginning of the season. Listen as the dudes explain. The conversation goes existentially deep as usual. Enjoy. Thank you for listening.

In this Episode:

In a previous episode, the dudes talked about a hotel bed that was too high. Sean just got a new bed and you might be able to guess what he thinks of it...
You Got This, Mental Health featuring Dr. Al Freedman - We've had him on Multiple times because he's doing great work. Dr. Al's sweetspot is the intersection between Rare Disease and Mental Health because of his son Jack who lived with SMA for 26 years. Dr. Al joins us to talk about the fact that Rare Disease may not be the only source of challenge in someone's life.
The Dudes are both wired for productivity so staying busy is a big part of life. But when is it too much? Where's the line? How does this line play into our vision and goals?
Thank you notes - Ted Lasso, and Sean's Landlords.

Links and Resources:

This episode brought to you in part by Reata Pharmaceuticals.

Reata Pharmaceuticals is the company that makes SKYCLARYSTM (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

Next Episode

222 - Is Technology Good or Bad? Yes.

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: