When the lights go out and the crowd falls silent, I can finally exhale. All the months of planning culminate in this moment. I watch the audience dance and sing, and think of my son, Joey, and how much he loved music, how it gave him a voice and continues to connect us. His joy lives on through our concerts. Those are the best moments.
“Where words fail, music speaks.”
— Hans Christian Andersen
We lost Joey on March 30, 2010, just shy of his fifth birthday. He was diagnosed with Dravet syndrome, a rare and serious form of epilepsy, in the early 2000s. At that time, we didn’t have the treatment options available now, and there wasn’t much we could do. Dravet robbed Joey of his ability to speak, but it didn’t take away his zest for life.
Music made Joey happy and allowed him to show the world who he was. Whenever the Teletubbies theme song came on, he’d grab someone’s hand, start singing and dancing, and he’d have the biggest smile on his face. He could sing and dance, even if it was in his own unique way.
“Music made Joey happy and allowed him to show the world who he was.”
After Joey was diagnosed, my wife, Nory, and I started thinking of ways to raise money to help the next family and make their lives a little easier. We wanted to make a greater impact. Since Joey loved music, and I had worked in the music industry, it made sense to use music as our primary fundraising vehicle. To turn this dream into a reality, I partnered with my long-time friend and colleague Kevin Baird. That’s how Joey’s Song was born.
Joey’s Song uses music to raise money for much-needed research to find treatments for epilepsy. To date, we’ve recorded 5 albums and hosted 6 live concerts (our seventh one is this December)! Our first major project was a compilation of rare, unreleased music from well-known musicians. We have produced 5 awesome CDs featuring over 80 award-winning artists like Rosanne Cash, Montgomery Gentry, Neko Case, and some members of the band R.E.M.
My proudest moment was when that first set of CDs came out. It was only 8 months since Joey had died. I knew we were raising money in memory of my son. All that hard work had paid off, and I thought to myself…we’re going to do some good things over the next few years.
“My proudest moment was when that first set of CDs came out. I knew we were raising money in memory of my son.”
Producing CDs was great, but it wasn’t until we started doing live events that we made a bigger impact, just like my wife and I envisioned. Through music, we can put on a show that connects people, raises money, and creates a positive experience. The night itself is inspiring. Artists are playing fun 70s and 80s covers—the Rolling Stones, The Beatles—and everyone leaves feeling exhilarated. They come back year after year. And we bring in up to 50K in a night! A small donation toward a concert yields 4 times the original amount. It’s the multiplier effect in action. And people are having a great time, too.
“A small donation toward a concert yields 4 times the original amount. And people are having a great time, too.”
Because of the success of our concerts, we’ve been able to support charities like CURE (Citizens United for Research in Epilepsy) and Gio’s Garden, a respite center in our hometown. It actually makes me tear up just thinking about it. CURE helps to secure a better future for those living with epilepsy. It’s run by Susan and David Axelrod. Their daughter has suffered from seizures, and their goal is to move the bar on treatment and accelerate the process of finding a cure. We’ve been able to cosponsor CURE events and support their research with donations from our concert ticket sales.
Gio’s Garden holds a special place in my heart, too. Not only do they use music therapy as part of their program, my wife and I know firsthand how difficult it is to leave a child with uncontrolled seizures in the care of anyone else, even if it’s just to run to the grocery store. I can count on one hand how many times we left Joey in the care of anyone else. Gio’s offers a safe place with nurses and caretakers to offer parents a break if they need it. And I love how they incorporate music therapy to help special needs children interact and feel part of the room when they’re nonverbal, like Joey was.
I know the difference we make in the lives of those at CURE and Gio’s Garden—all because of music. Music has been part of my life forever, but now with Joey’s Song it’s a tool to support families like ours. Being able to use music as a connection point helped me personally deal with losing Joey. The music business, my music friends, they helped me get from point A to point B. Now, our goal is to help the next family.
“Music helped me personally deal with losing Joey. Now, our goal is to help the next family.”
There’s a reason why everybody loves music. It doesn’t matter what kind you like—country, rock, jazz—everyone understands that music resonates at some level with all of us. It certainly resonates with special needs kids. Now, we can use that connection to benefit a great cause.
My dream is to move our events to larger venues—those that hold 10,000 seats or more. That way we can raise more money and help more families in need. I’m absolutely convinced that when researchers find a cure for epilepsy, it will be in a test tube we funded. All because of Joey and his love of song.
The next Joey’s Song concert is December 6, 2019 in Madison, WI, featuring artists like The Know-It-All-Boyfriends, Chris Collingwood, and Mark Mulcahy. To donate or purchase tickets, visit joeyssong.org.
About Joey’s Song
The Joseph Gomoll Foundation, aka Joey’s Song, supports a wide variety of organizations whose missions are geared toward funding epilepsy research and programs for children with special needs. Learn more and watch the video at joeyssong.org.
CURE is run by Susan and David Axelrod to accelerate the process of finding a cure for epilepsy. Their daughter has suffered from seizures, and their goal is to move the bar on treatment. Joey’s Song has cosponsored CURE events and supported their research by donating a large part of the money they raise from their concerts. Learn more at cureepilepsy.org.
About Gio’s Garden
Gio’s Garden is a respite center that provides therapy and programs for children with special needs, including music therapy. Learn more at giosgarden.org.