How do we build an effective Global Rare Disease community?  It all starts with sharing stories and ideas.  Join the dudes as they hear Manish Gore's story about Alport Syndrome, and discuss the differences between the US and India and the Rare Disease World.

Manish's Resources:

Manish's Blog, Doting Beans: www.hope4kidneys.info

Organization for Rare Diseases India: www.ordindia.in

Mental Health, Zifcare, India: www.zifcare.com

Alport Syndrome Foundation of USA: www.alportsyndrome.org

Kidney Research UK: www.kidneyresearchuk.org

A few weeks ago, Sean read an engaging article from the Huffington Post called How to Know if You're an Interrupter or a 'Cooperative Overlapper'.  The discussion of this article lead to an exploration of issues on the endless video conference calls that have become a big part of our lives lately.

Kyle still thinks the term 'Cooperative Overlapper' is just a made up term to make Sean feel better but you be the judge.

few weeks ago, Sean read an engaging article from the Huffington Post called How to Know if You're an Interrupter or a 'Cooperative Overlapper'. The discussion of this article lead to an exploration of issues on the endless video conference calls that have become a big part of our lives lately.

Kyle still thinks 'Cooperative Overlapper' is just a made up term to make Sean feel better but you be the judge.

We sent Shelley a 2DD 2021 Desk calendar.  She sent back pictures of her brother, Jeff.  That sparked a heartfelt conversation about her family and some of the experiences in her life with her brother.  Join us as Shelley shares her experiences - you may end up with a few nuggets that make you a better person.

Shelley Bowen is Director, Family Services and Advocacy at the Barth Syndrome Foundation: https://barthsyndrome.org

We sent Shelley a 2DD 2021 Desk calendar.  She sent back pictures of her brother.  That sparked a heartfelt conversation about her family and some of the experiences in her life with her brother Jeff.  Join us as Shelley shares her experiences - you may end up with a perspective that makes you a better person.

Shelley Bowen is the Director of Family Services and Advocacy for the Barth Syndrome Foundation: barthsyndrome.org

Sometimes we wish there was an instruction manual for life's transitions. How do we decide when it's time to make a transition to a walker or wheelchair, power chair, hand controls - and how does ego play into the situation?...Listen as the dudes discuss and search for answers.

Sean's column; No Good Excuse, "The 'Right' Time Can Be a Moving Target With a Progressive Disease."

Sometimes we wish there was an instruction manual for life's transitions. How do we decide when it's time to make a transition to a walker or wheelchair, power chair, hand controls...Listen as the dudes discuss and search for answers.

Sean's column; No Good Excuse, "The 'Right" Time Can Be a Moving Target With a Progressive Disease."

"There is real power in not caring what others think."

Ben's Friends is an online social network for people with rare diseases.  Ben Munoz started it after suffering an AVM in 2006 and undergoing multiple brain surgeries.  During his recovery he was feeling alone and scared so he reached out to others to form Ben's Friends.  Ben joins the dudes to impart his knowledge and wisdom from his years of leading Ben's Friends and the company he created.

"There is real power in not caring what others think."

Ben's Friends is an online social network for people with rare diseases. Ben Munoz started it after suffering an AVM in 2006 and undergoing multiple brain surgeries. During his recovery he was feeling alone and scared so he reached out to others to form Ben's Friends. Ben joins the dudes to impart his knowledge and wisdom from his years of leading Ben's Friends and the company he created.

To honor Rare Disease Day, we invited our friend Dr. Al Freedman back on to talk about how people living with Rare Disease (like Kyle and Sean) can remain proud even if they are not proud of everything about themselves.  Dr. Al says a big part of it is gratitude and focusing on your strengths.  Listen to hear all the details including the strengths of his son Jack who has been living with SMA for 25 years.

Reach out to Dr. Al at: freedmancounseling.com