Two Disabled Dudes

Why do we all react differently to a situation - especially when the stakes are high, such as the current situation with Coronavirus?  Sean and Kyle have a few thoughts to share but first we must hear about Sean's recent cluster at physical therapy, and Kyle explains how it is possible to lock yourself out of your own bathroom. 

Season 4 starts in August but there are 111 other episodes to enjoy so check them out.  We hope you have a great summer!

We’ve had the privilege to work with Amicus Therapeutics on multiple occasions and each time we are moved by their commitment and consistent execution of their corporate mission. This virtual patient panel they facilitated is no exception! Three weeks into the company’s work-from-home arrangements due to COVID-19, Amicus wanted to continue connecting their team members with each other and the patient communities they work on behalf of. We were honored to moderate the conversation between Naomi (from the UK), Mike (from New Jersey) and David & Karen (from Arizona) for the global Amicus team and their families. The panelists helped us laugh, encouraged our resilience and inspired us to maximize our time as we embrace the rare disease journey and cope in times of uncertainty.

After a brave fight, Taylor Kane lost her Dad to a rare disease called Adrenoleukodystrophy (ALD) when she was 3 years old.  She subsequently found out that she was a carrier of this X-linked disease.

For a long time it was believed that "carriers don't get symptoms."  However, that myth has been busted and Taylor Kane has a clear mission in life.  She started a non-profit called Remember the Girls that builds support and community for carriers of X-linked diseases.  What is X-linked?  The Dudes had the same question and you'll have to listen to find out.

As much as anything in life, Taylor Kane loves to connect with other young carriers of Rare Diseases because connecting with someone who truly understands you is "like no other."  You can connect with her by reading her book Rare Like Us, and you can find her an Remember the Girls on social media at:

Remember the Girls: Web: https://www.rememberthegirls.org/ Facebook: https://www.facebook.com/remembergirls Twitter: https://twitter.com/remember_girls Instagram: https://www.instagram.com/rememberthegirls/

Taylor Website: https://www.taylorkane.com/ Twitter: https://twitter.com/taylorkane23 Instagram: https://www.instagram.com/taylorkane23/ LinkedIn: https://www.linkedin.com/in/taylorckane/

Hawken Miller is an accomplished young writer with a clear purpose in life.  He is an incredible representative for the Duchenne Muscular Dystrophy Community and he has a passion for the work of CureDuchenne.

Writing is his chosen medium and he has a keen interest in the e-sports world.  He uses video games to connect with others in the Duchenne Community and he uses writing to explain video games to the every day person.  Hawken is a recent graduate of USC and his journalism experience includes The Sacramento Bee, KTLA, The Washington Post, and Bio News Services.

Visit Hawken's website: http://hawkenmiller.com 

Read his most recent columns: https://musculardystrophynews.com/category/hawks-eye-view-a-column-by-hawken-miller/

And find out about the work of CureDuchenne: https://www.cureduchenne.org/

As everyday life continues to be dominated by coronavirus Quarantine, The Dudes discuss the pros and cons of the situation.  They prognosticate about how things might change because of this pandemic.  Tune in and play along with the thought experiment.