Uploaded April 2022 | Updated September 2026, 2 weeks ago

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In this episode, Lisa and McFinn are joined by American healthcare activist and lawyer Ady Barkan. Ady was diagnosed with ALS shortly after the birth of his son Carl, at the young age of 32. He joins us with his wife Rachael King by his side. Rachael is the mother to their two young children, Carl and Willow. She is a professor at UCSB and manages to balance motherhood, working, and being the pillar of strength for their family.

We will take you through Ady’s journey on the challenges he faces having ALS and the amazing things he has accomplished while fighting this disease. His advocacy efforts focus on fighting for healthcare justice for all, and his recent documentary Not Going Quietly highlights his efforts. Ady is an inspiration to us all, ALS has not stopped him from having a voice and standing up for the need for affordable healthcare in America.

McFinn and Lisa are part of EverythingALS.org, whose mission is to accelerate treatments for ALS through citizen-driven research.

To learn more about EverythingALS, please visit: everythingals.org

Get Involved in ALS Research: everythingals.org/research

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