MADISON (WKOW) -- Epilepsy is one of the most common neurological conditions in the world. However, it's also one of the least talked about and most under funded. One family is trying to change that. Elishah Oesch introduces us to Anne and Dave Giroux, the founders of Lily's Fund for epilepsy research. They're October's Jefferson Award winners.
Anne Giroux says, "she was a young toddler and she would be walking along and just drop to the ground suddenly." Anne and Dave Giroux are talking about their daughter Lily. She was diagnosed with epilepsy at age two.
Dave says, "we were like most people, we knew nothing about this condition." On top of that, Lily's epilepsy does not fit the stereotype. She does not shake or tremble. Rather, she suffers from atonic epilepsy. Dave says, "she has the kind where you loose muscle tone, you become more limp." Fortunately, Lily's condition is treatable with medication. However, medication can't help everything.
Anne says, epilepsy "still has a stigma against it. It's not the same as saying, 'I have allergies." Statistics show, epilepsy will effect one in twenty six people in their lifetime, but it's often not talked about. That's something the Giroux's are trying to change through their non-profit organization, Lily's Fund. Lily's fund is all volunteers, and Anne says, it involves, "some of the most creative and professional people you have ever met."
In fact, no one involved in Lily's Fund receives a dime for their time, but they are making a difference. Volunteers with Lily's Fund help raises awareness, and valuable research funds for epilepsy. Most importantly, that funding stays here locally at the UW Madison. The process has been an ever evolving and growing one, but things are starting to really pick up. Dave says,"we're at the stage now where we're working with the U-W School of Medicine to fund a research position that's exclusively focused on epilepsy research." Not only that, but UW Madison is currently in the process of building a new research center called WIMMER 2. Inside it, it'll house all kinds of up to date neuroscience research, and a big part of that focuses on epilepsy.
Anne says, having the research done here locally makes a big difference in the fight to find a cure. She says, the doctors and researchers "who are working on this issue... we can go down and talk to them and they have pictures of people with epilepsy in their lab."
However, a cure has yet to be found, and more funding is needed. Which is why, the Giroux family plans to continue on, and why they're this month's Jefferson Award winners. Dave sums it all up by saying, "we started something. Now we can't stop!"
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