If he were 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 could pursue. Sadly, those dreams will never come true.
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 and uncontrollable seizures. which made him unable to speak. Despite the syndrome, he was a fun-loving kid who was happiest when music was playing.
“He sang and danced in his own way,” explains Mike Gomoll. “Despite life’s challenges, Joey was upbeat and full of energy until the day he passed away.”
In the winter of 2011, a year after Joey’s death, Gomoll launched the first edition of Joey’s Song, now an annual celebration and concert that honor her son’s love for music while raising funds for research. on epilepsy and related charities. The ninth edition of Joey’s Song is scheduled for January 8 at Le Sylvee with a cast of star musicians volunteering their time and talents.
Joey’s Song started out as a CD project, Gomoll says. “I’m a music fan and loved buying charity compilation CDs,” he explains. “But that was around the time the CDs were about to be released, and we found out that we raised more money on the CD’s first launch party than we did with the CDs. CD themselves, so we changed our tactics. “
Gomoll was a DJ at Headliners nightclub in the 1980s and had known Garbage drummer and sound engineer Butch Vig from his college days. After Garbage’s 2013 performance at a Madison Mallards music festival in Warner Park, Gomoll met his old friend and told him about Joey’s Song.
“Butch said, ‘Sure I’m going to play. Just tell me where and when, ”Gomoll recalls. Since then, the event has attracted great musicians. This year’s lineup includes Vig’s band The Know-It-All Boyfriends, Rick Nielsen and Daxx Nielsen of 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 is still speculation about who else might show up.
“I often get calls like: ‘Do I [Foo Fighters frontman and former Nirvana drummer] Is 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 could raise $ 230,000 or more through the sale of Sylvee tickets at $ 47.50 each, as well as pledges from sponsors, which include large pharmaceutical companies. Epilepsy affects 65 million people worldwide and 150,000 new cases are diagnosed in the United States each year. Further research is vital, says Gomoll.
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 main recipients of Joey’s Song funds, which Gomoll estimates to have exceeded $ 500,000 to date.
“Our goal is to help the next family,” says Gomoll. “Someday they will find a cure for Dravet’s disease, and you will never convince me that our contributions did not purchase the test tube that was used to unlock the cure.”
The tears evident in Gomoll’s voice when 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. Contact him at [email protected]
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