Issue link: https://read.dmtmag.com/i/84343
work to inspire Someone You Should Know: Anne and Dave By Elishah Oesch Walking into Anne and Dave Giroux's house is like coming home again. Everything from the smell of coffee hanging in the air to the plate of pancakes and open syrup bottle on the kitchen table smacks of a vibrant, busy family on the go. Running through the house, trying to get everyone out the door on time to school, Anne calls out, "Do you want raspberries in your lunch?" Dave chuckles softly to himself and says, "Clearly it's lunch-packing time." Dave and Anne's life is pretty much like every other family's, except for one difference: One of their three daughters, Lily, has epilepsy. "We first found out that Lily had epilepsy when she was a tod- she says, describing how people are afraid to talk about it. Despite the fact that one in 26 people will develop some type of epilepsy in their lifetime, many suffer in silence. The couple's second focus—research—is, quite simply, to find dler," says Anne. "She would walk from room to room and peri- odically drop to the ground. We didn't know if it was just normal toddler stuff, like learning to walk, or something else." But after more observation, they decided to take Lily in to their physician. The doctor told them that Lily was having atonic sei- zures. Dave says it was something they weren't really aware of. "We had some knowledge of epilepsy and seizures, but with this type, Lily doesn't shake, she becomes limp," he says. Technically speaking, atonic seizures consist of a brief lapse in muscle tone that lasts less than 15 seconds. Like most parents, Anne and Dave were worried. In fact, Anne says she was "pretty freaked out." But they were determined to deal with the issue proactively. After heading online to research the condition, the couple quickly learned that not only was the infor- mation they found scary, but often "inaccurate and totally wrong." So they took a person-to-person approach with doctors and a cure. With that mission in mind, Anne and Dave started Lily's Fund for Epilepsy Research. Five years later, it's grown to include hundreds of volunteers plus several projects and a large annual event called Lily's Luau. In ad- dition, the program has raised more than $250,000 for research (which is guided by a scientific advisory committee) through the UW Foundation, and have even appointed a Lily's Fund Fellow at the UW School of Medicine and Public Health. Even more impressive is the fact that all money raised here stays here. It's something Anne and Dave say is a win-win for everyone. "We love that it's all local because we get to talk one-on-one with the scientists," they say. On the flip side, it also gives the scientists actual faces to help fo- Dave says. With two heads together like these, and a small army of volun- medical professionals. Over time, they were able to get Lily's con- dition under control with medication, but Anne wanted to take it one step further and help others. Anne realized that the key was a twofold approach focusing on awareness and research. "Epilepsy still has a stigma attached to it," Elishah Oesch is co-anchor at WKOW 27s Wake up Wisconsin. Find more at wkow.com. ••• cus their day-to-day grind to find a cure. "We're using brain power here at the UW to solve a brain issue," teers from all around the area behind the cause, their dream of one day having an epilepsy center here, and eventually finding a cure just might come true. Giroux Turning personal experience into a mission to help those living with epilepsy Nonprofit Profile: Lily's Fund for Epilepsy Research What it is: An all-volunteer organization that works through the UW Foundation to support those living with epilepsy. 34 BRAVA Magazine What it does: By raising funds through various events, the group funds cutting-edge research by local medical and scientific experts. October 2012 How to get involved: The organization depends solely on volunteers for everything from event coordination to strategic planning. How to give: Join the annual Lily's Luau in January, hold a Lily's Lemonade Stand, raise awareness on Purple Day in March or give monetarily. For more information: Find Lily's Fund on Facebook, Twitter and at lilysfund.org Photo by Bobbi Petersen