DTN Podcast | Jim Alstott Ep. 78 | Joey's Song: He Couldn't Speak. The Music Did. | Mike Gomoll

Description

What does a child who never spoke a word leave behind?Mike Gomoll's son Joey died at five. With Butch Vig, he built Joey's Song: $2 million raised for epilepsy research, zero paid staff. Dravet syndrome, Freezing Man, 35 artists playing free.Joey couldn't speak. When the music came on, he'd find whoever was in the room, grab a finger, and make sure they were dancing. Fifteen years later his dad runs Joey's Song and Freezing Man, two nights at a 2,500-seat room in Madison with members of Guns N' Roses, Cheap Trick, Tears for Fears, The Bangles and the Goo Goo Dolls, all of them playing for nothing.Mike on the misdiagnosis years, the brain's "blue screen of death," the night Butch Vig asked what he could do to help, and why one in 26 people have epilepsy and hardly anyone says so out loud.✨ In this episode:✅ Joey, Dravet syndrome, and two years of misdiagnosis✅ Why music got through when words couldn't✅ Epilepsy as the brain's blue screen of death✅ Zone defense: protecting Julia and Sam✅ Grace for the people who say the wrong thing✅ How a CD release party became Joey's Song✅ The night Butch Vig asked how he could help✅ Freezing Man: 35 artists, two nights, nobody paid✅ One in 26: why epilepsy stays in the shadows✅ Making the ask for Joey's SongSound bites"Then we lost Joe, and it was time to help the next family.""You saw the sun in his face.""My five-year-old son died. I need your help."Chapters00:00 The kid who made sure you were dancing01:46 Welcome, Mike02:10 Headliners, IBM, and the road back to Wisconsin04:50 Three kids from Guatemala, and Joey's first seizure05:20 "Then we lost Joe, and it was time to help the next family"06:42 Why music got through when words couldn't07:37 Epilepsy as the brain's blue screen of death10:00 What you saw in Joey's face11:35 Two years of misdiagnosis12:11 The small breakthroughs that carried them17:50 Zone defense: protecting Julia and Sam18:55 Grace for the people who say the wrong thing20:05 Joey's Song begins as a CD release party22:23 Butch Vig makes the fatal mistake of as