Rare Resilience: A Mental Health Podcast for the Rare Disease Community

When a rare disease is progressive, hope can be hard to hold onto. How do we face the realities of a rare condition that progresses over time, while keeping the power of hope alive?

Welcome to Rare Resilience, a podcast about rare disease and mental health. Hosted by psychologist and father Dr. Al Freedman, we explore stories of people who have lived with and survived rare disease, and the challenges they overcame along the way.

In this episode, we are joined by father, musician, writer, and educator Pat Moeschen. Pat lives with limb-girdle muscular dystrophy, a progressive neuromuscular condition which affects his mobility. He works with young men living with MD at Parent Project Muscular Dystrophy, where he leads the Adult Advisory Council. Pat opens up about his long journey with progressive rare disease. With great humor, he explains how his mind and thinking evolved over time as his disease progressed. He shares stories of adapting to life in a wheelchair, raising kids as a parent with rare disease, and why true mental resilience can be found by those willing to notice the little things.

Thank you so much for listening! If you like what you hear, remember to subscribe to Rare Resilience wherever you get your podcasts.

Rare Resilience is produced by BloodStream Media. For more information or to start a podcast of your own, visit bloodstreammedia.com.

Show Notes: To read Pat's writing, check out his blog Moeschen! To read Josh Winheld's autobiography, check out Worth the Ride: My Journey with Duchenne Muscular Dystrophy

A message from Dr. Al: To all the rare families out there watching or listening, remember. Anything is possible. Never give up. And we're all in this together.

Rare disease is a family affair. What does it take to raise a rare family when the financial and emotional challenges begin to add up?

Welcome to Rare Resilience, a podcast about rare disease and mental health. Hosted by psychologist and father Dr. Al Freedman, we explore stories of people who have lived with and survived rare disease, and the challenges they overcame along the way.

In this episode, we are joined by Roberta Smith. A mother to a daughter with alagille syndrome, she's also the President of the Alagille Syndrome Alliance. Roberta explains the difficulties she faced as a single mom raising two girls, one living with a rare disease. She explains why surviving rare disease as a family ultimately comes down to a choice – between resilience and victimhood.

Thank you so much for listening! If you like what you hear, remember to subscribe to Rare Resilience wherever you get your podcasts.

Rare Resilience is produced by BloodStream Media. For more information or to start a podcast of your own, visit bloodstreammedia.com.

A message from Dr. Al:

To all the rare families out there watching or listening, remember. Anything is possible. Never give up. And we're all in this together.

In rare disease, our mental health often gets left behind as we prioritize the physical. But those unseen struggles and unspoken hardships can be the hardest parts to live with. Welcome to Rare Resilience, a mental health podcast for the rare disease community. This show explores the stories of people who have lived with and survived rare disease, and the challenges they overcame along the way.

Our host is psychologist and speaker Dr. Al Freedman. Dr. Al has spent over 30 years supporting individuals and families living with rare disease. Advocacy groups and pharmaceutical companies consult him for his expertise. Through his work, Dr. Al strives to honor his son Jack, who lived to the age of 26 with spinal muscular atrophy.

In this first episode, we are joined by producer and entrepreneur Patrick James Lynch, co-founder and CEO of Believe Limited. Patrick shares his experience growing up with his brother Adam, both of them living with hemophilia. Patrick explains what Adam's death from hemophilia as a teenager taught him about grief and how it shaped his life and work as an adult with rare disease.

Thank you so much for listening! If you like what you hear, remember to subscribe to Rare Resilience wherever you get your podcasts. Rare Resilience is produced by BloodStream Media. For more information or to start a podcast of your own, visit bloodstreammedia.com.

A message from Dr. Al: To all the rare families out there watching or listening, remember. Anything is possible. Never give up. And we're all in this together.