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Mike Gomoll shares how Joey’s Song grew from a personal mission into a movement.
What can happen when one little boy’s love of music becomes a movement?
Mike Gomoll never expected epilepsy advocacy to become his life’s work.
Mike and his wife adopted their son Joey from Guatemala as an infant. About a month after Joey came home, he experienced his first seizure. Eventually, Joey was diagnosed with Dravet syndrome, a rare form of epilepsy. Joey was non-speaking, but music became one of his greatest connections to the world. When music started playing, Joey wanted everyone around him dancing.
After Joey died just before his fifth birthday, Mike took an idea he had already begun imagining and created Joey’s Song, an organization built around one goal: helping the next family.
What began with CDs and small acoustic release parties grew into an annual rock-and-roll event bringing together artists connected to the Goo Goo Dolls, Garbage, The Bangles, The Go-Go’s, Tears for Fears and many more. The musicians donate their time, audiences come for the music, and along the way thousands of people learn about epilepsy. Joey’s Song has now raised more than $2 million for epilepsy research.
Mike and Alycia also dig into an important reality: epilepsy is often invisible until a seizure occurs. Seizures can also take many different forms, from convulsive seizures to brief lapses in awareness. Around 50 million people worldwide live with epilepsy, and stigma and discrimination remain significant challenges.
This conversation is about epilepsy education, research and advocacy, but it is also about community.
As Mike says, sometimes we simply need to give people the chance to be good.
From a child who loved to dance to rock stars volunteering their time in the middle of a Wisconsin winter, Joey’s story continues to bring people together and help the next family.
A Couple of Mike’s Quotes from the Episode
You need to give everybody the chance to be good.
~ Mike Gomoll
We all do better when we all do better.
~ Mike Gomoll
Main Episode Themes
🎵 Music as Connection
Joey was non-speaking, but music gave him a powerful way to connect with the people around him. When music came on, everyone was expected to dance.
💜 Understanding Epilepsy
Epilepsy can present in many different ways, and because it often has no visible manifestation between seizures, people may not understand what someone is navigating.
👨👩👦 Helping the Next Family
Mike repeatedly returns to the parent sitting in a neurologist’s office today, frightened and unsure what comes next. That family drives the mission.
🔬 Research Matters
Joey’s Song directs its fundraising toward epilepsy research, with the hope that today’s investment moves the timeline toward better treatments and outcomes.
🤝 Community Can Be Powerful
Mike believes people should be given the opportunity to do something good. Artists donate their performances, volunteers build the event and audiences become part of the mission.
🎸 Advocacy Can Look Different
Epilepsy education does not only happen in hospitals or conferences. At Joey’s Song, it happens while thousands of people are dancing to rock and roll.
🎧 Episode 159: Chapters
00:00 Podcast Welcome
00:33 Meet Mike Gomoll
01:48 Life Before Joeys Song
05:04 Adoption And Diagnosis
08:10 Joeys Love Of Music
09:40 From CD Nights To Concert
11:09 All Star Jam Origins
12:36 How Artists Say Yes
15:54 The Next Family Mission
17:20 Epilepsy Risks And Stigma
19:48 Research First Nonprofit
23:02 How To Get Involved
25:38 Rapid Fire Backstage
28:42 Final Reflections And Signoff
Connect with Mike Gomoll
Learn more, follow Joey’s Song, support epilepsy research, watch the livestream or explore tickets and sponsorship opportunities at JoeysSong.org.
Support Joey’s Song by following the organization, subscribing to its YouTube channel, watching the free livestream, attending the event or by donating and corporate sponsorships.
Connect with Alycia:
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Stay tuned for more inspiring conversations on Pushing Forward with Alycia. Open hearts, clear paths. Let’s go.
About Pushing Forward with Alycia
Pushing Forward with Alycia gives disability a voice through conversations about accessibility, inclusion, ambition, resilience, leadership, advocacy, and creating a more inclusive world for all people.
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