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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...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.
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
What you we do when things do not go as planned. Your life feels like it's falling apart, and you need to rebuild part if not all of your vision for your future. The dudes have a few thoughts on how to proceed based on the rebuilding they've had to do in their lives.
What you we do when things do not go as planned. Your life feels like it's falling apart, and you need to rebuild part if not all of your vision for your future. The dudes have a few thoughts on how to proceed based on the rebuilding they've had to do in their lives.
**This is a 2 part episode so if you haven't listened to part 1, check it out.**
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