Lily Giroux is a high school freshman now – a confident young woman who can easily explain that she has seizures. She’s the inspiration behind Lily’s Luau, an annual mid-winter party and fundraiser that this year reached its goal to help fund a new epilepsy researcher at the University of Wisconsin-Madison.
“It’s a tangible sign of the support we’ve received and the progress we’re making,” said David Giroux, Lily’s dad, after the January 15 fundraiser in the Memorial Union. The medical school is recruiting a post-doctoral candidate as the first Lily’s Fund Fellow. He or she will receive two years of funding for epilepsy research and should be in place in time to attend next year’s luau.
By helping scientists early in their careers, Giroux hopes to place them on a trajectory to continue research on the disease that will affect one of every 26 people in the United States. “We are bringing the condition out of the shadows and putting it in the spotlight,” he said.
Rick Moss, a senior associate dean in the UW School of Medicine and Public Health, called the public-private, 50/50 partnership visionary. Giroux believes it’s a model that could be used to add researchers in other departments.
Lily’s Fund has two goals: To both support and celebrate epilepsy research at UW-Madison, using the luau and other efforts to build public awareness. “We are bringing the condition out of the shadows and putting it squarely in the spotlight,” Giroux said.
Although Lily manages her epilepsy through medicines, the Giroux family knows that medicines can stop working. “We need to keep moving forward to improve treatment and diagnosis,” Giroux said. “We need more tools in the toolbox.”
Giroux and his wife, Anne Morgan Giroux, both graduates of UW-Madison, hosted the first Lily’s Luau in 2009, raising about $20,000. This year, the event netted $64,000. “We’re on a pretty steady rate upward,” Giroux said, crediting an extensive volunteer base and a network of people who “care deeply about the cause and directing research dollars to the UW-Madison.”
More than 500 people, many dressed in Hawaiian shirts, grass skirts, shorts and sandals, shared a tropical buffet and participated in live and silent auctions on a cold Wisconsin night. “(The luau) is first and foremost a party,” Giroux said. “Finding a cure should be a joyful pursuit.”
For more information about Lily’s Fund, visit www.lilysfund.org.