Joey’s Song raises money for epilepsy research with the goal to ‘help the next family’

Mike Gomoll launched Joey’s Song, an annual celebration and concert that honors his son’s love for music while raising money for epilepsy research and related charities.
Joey Gomoll in the center with other musicians surrounding his photo

Joey Gomoll (pictured center) died of Dravet syndrome in 2010. The Joey’s Song fundraiser is supported by musicians including (left to right) Freedy Johnston, Trapper Schoepp, Butch Vig, Sam Gomoll and Brian Ray. (Illustration by Tim Burton/Photos courtesy of Joey Gomoll)

Were he alive today, Joey Gomoll would be looking forward to his 17th birthday in April, perhaps trying out his new driver’s license, or considering what college or career he might pursue. Unfortunately, those dreams will never be fulfilled.

Adopted from Guatemala in 2005 by Sun Prairie residents Mike and Nory Gomoll, Joey died in 2010 — just weeks before his fifth birthday — of Dravet syndrome, a rare and debilitating form of epilepsy characterized by persistent, uncontrollable seizures that left him unable to speak. Despite the syndrome, he was a fun-loving kid who was happiest when music was playing.

“He would sing and dance in his own way,” says Mike Gomoll. “Despite the challenges that life threw at him, Joey was upbeat and full of energy up until the day he left us.”

In winter 2011, a year after Joey’s death, Gomoll launched the first edition of Joey’s Song, now an annual celebration and concert that honors his son’s love for music while raising money for epilepsy research and related charities. The ninth edition of Joey’s Song is scheduled for Jan. 8 at The Sylvee with an all-star cast of musicians who are donating their time and talents.

Joey’s Song started as a CD project, Gomoll says. “I’m a music fan and I loved to buy charity compilation CDs,” he explains. “But this was about the time CDs were on their way out, and we discovered that we raised more money from the first CD launch party than we did from the CDs themselves, so we changed tactics.”

Gomoll was a DJ at the Headliners nightclub in the 1980s and knew Garbage drummer and sound engineer Butch Vig from his college days. After Garbage’s 2013 performance at a music festival hosted by the Madison Mallards at Warner Park, Gomoll met up with his old friend and told him about Joey’s Song.

“Butch said, ‘Sure, I’ll play. Just tell me where and when,’ ” Gomoll remembers. Since then the event has attracted major musicians. This year’s lineup includes Vig’s band The Know-It-All Boyfriends, Rick Nielsen and Daxx Nielsen from Cheap Trick, Dave Pirner of Soul Asylum, Jody Stephens of Big Star and even a special appearance by comedian Charlie Berens. Given Vig’s contacts, Gomoll says there’s always speculation about who else might show.

“I often get calls like, ‘Is [Foo Fighters frontman and former Nirvana drummer] Dave Grohl coming?’ And I have to say, ‘No, not this year,’ ” says Gomoll.

The first Joey’s Song event, held in Chicago, raised $12,000 for charity. This year Gomoll estimates he might raise $230,000 or more from the sale of Sylvee tickets at $47.50 each, plus pledges from sponsors, which include major pharmaceutical firms. Epilepsy affects 65 million people worldwide, and 150,000 new cases are diagnosed in the U.S. each year. Continued research is vital, Gomoll says.

Joey’s Song is a volunteer-run organization, so all proceeds go to research and respite. The Epilepsy Foundation; Chicago-based Citizens United for Research in Epilepsy, or CURE; and Gio’s Garden, the Middleton-based respite and therapy center, are the key recipients of funds from Joey’s Song, which Gomoll estimates to date have exceeded $500,000.

“Our goal is to help the next family,” Gomoll says. “Someday they’re going to find a cure for Dravet’s, and you will never convince me that our contributions didn’t buy the test tube that was used to unlock the cure.”

The tears evident in Gomoll’s voice as he says this indicate that he will never give up the fight, and that would make his son Joey very proud.

Michael Muckian is a contributing writer for Madison Magazine. Reach him at mmuckian@icloud.com.

Footer that says Subscribe with covers of Madison Magazine