Episode 78

Joey's Song: He Couldn't Speak. The Music Did.

Guest: Mike Gomoll

Listen to this episode

Cover art for episode 78: Joey's Song: He Couldn't Speak. The Music Did.

Show Notes

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. I need your help."
43:21 What Joey would make of all this
45:03 The playlist round
46:56 Three songs that always filled the dance floor
48:56 Carry On Wayward Son
51:52 Start Me Up
52:49 Guilty pleasure: Call Me Maybe and Harry Styles
54:15 The song the world needs right now: Everybody Hurts
56:13 "Name," and the breakup that still stings
1:01:34 How to help Joey's Song

Today's Playlist
https://open.spotify.com/playlist/1o15TNcLS2oNtfEHU50tWs

💬 QUESTION FOR YOU
Who taught you something important without ever saying a word?
Share your story in the comments.
👍 Like, Subscribe, and Share to help others discover meaningful conversations about music, loss, and what we do with it.

🔗 MENTIONED IN THIS EPISODE
Joey's Song and the Freezing Man concerts, The Sylvee, Madison, WI
Butch Vig
Dravet syndrome and epilepsy research

🌐 CONNECT WITH MIKE GOMOLL AND JOEY'S SONG
Website: https://www.joeyssong.org
Instagram: @joeyssong
Facebook: @joeyssong
Follow the Joey's Song podcast. The Freezing Man shows stream free on the Joey's Song YouTube channel the night of the show.

🎙️ CONNECT WITH JIM ALSTOTT
📖 Did I Just Have a Spiritual Awakening, or Was It Something I Ate? https://a.co/d/020nrzCH
🌐 https://www.jimalstott.com
🎙️ https://www.dtnpodcast.com

#DropTheNeedle #JoeysSong #FreezingMan #Epilepsy #DravetSyndrome #ButchVig #MusicAndGrief #EpilepsyAwareness