78: DTN Podcast | Jim Alstott Ep. 78 | Joey's Song: He Couldn't Speak. The Music Did. | Mike Gomoll
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 Song Sound 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." Chapters 00:00 The kid who made sure you were dancing 01:46 Welcome, Mike 02:10 Headliners, IBM, and the road back to Wisconsin 04:50 Three kids from Guatemala, and Joey's first seizure 05:20 "Then we lost Joe, and it was time to help the next family" 06:42 Why music got through when words couldn't 07:37 Epilepsy as the brain's blue screen of death 10:00 What you saw in Joey's face 11:35 Two years of misdiagnosis 12:11 The small breakthroughs that carried them 17:50 Zone defense: protecting Julia and Sam 18:55 Grace for the people who say the wrong thing 20:05 Joey's Song begins as a CD release party 22:23 Butch Vig makes the fatal mistake of asking how he can help 24:17 "You never know who's going to show up" 27:52 Rock camp for musicians 32:44 Boyfriends vs. Girlfriends: the battle of the bands 35:41 Why epilepsy stays in the shadows 39:58 One in 26: every seventh house on your block 41:37 "My five-year-old son died.