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Joey's Song exists because one Wisconsin family turned the loss of their son into an ongoing mission to fund epilepsy research. In Part 1 of this Reignite Resilience conversation, hosts Natalie Davis and Pamela Cass sit down with Mike, founder of Joey's Song, a nonprofit built in honor of his son Joe, who lived with Dravet syndrome, a severe and treatment resistant form of childhood epilepsy.

Mike walks through Joe's story from the beginning. Joe was adopted from Guatemala and had his first seizure at three months old, sitting on his grandfather's lap. What followed was four years of misdiagnosis before doctors identified Dravet syndrome, a chromosomal condition that left Joe nonverbal and in need of round the clock care. Joe passed away just before his fifth birthday in 2010. Despite everything he went through, Joe loved to sing and dance, especially to Elmo's song, and that joy became the reason the nonprofit carries his name.

Mike explains why he chose a goal over a rigid plan when he started Joey's Song, and how a chance reconnection with college friend and Grammy winning producer Butch Vig turned a small local concert into something neither of them expected. He tells the story of the night a newspaper interview accidentally created demand for a show that had no lineup yet, and how that pressure led to the format Joey's Song still uses: musicians from bands like Cheap Trick, Garbage, and the Bangles forming one time only supergroups on stage together.

The second half of the conversation turns to family. Mike and his wife Nori raised their two other children, Julia and Sam, through the loss of their brother, and Mike speaks candidly about how couples who lose a child face some of the highest rates of separation, and what kept his marriage steady through it. He also shares how Julia and Sam are involved in Joey's Song today, and how the volunteer team behind the event grew out of matching friends to the tasks they were already good at.

In This Episode:

• How Joe's story led to the founding of Joey's Song
• Why Dravet syndrome is a chromosomal form of epilepsy with no cure
• The unplanned story behind the celebrity supergroup concert
• How Mike and his wife supported their surviving children through grief
• Why Joey's Song runs entirely on volunteers and unpaid artists

Part 2 of this conversation covers the Freezing Man concert itself, along with the scale of epilepsy worldwide and simple ways listeners can help.

Listen to Reignite Resilience: https://reigniteresilience.buzzsprout.com
Learn more about Joey's Song: https://joeysong.org

The Quiet Gift: A Journey of Self Worth and Resilience is now available for download as an audible. Check it out!

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Disclaimer: The information provided in this podcast is for general informational purposes only and is not intended as a substitute for professional medical advice, diagnosis, or treatment. The co-hosts of this podcast are not medical professionals. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. Reliance on any information provided by the podcast hosts or guests is solely at your own risk.

Pamela Cass is a licensed broker with Kentwood Real Estate
Natalie Davis is a licensed broker with Keller Williams Realty Downtown, LLC