By Rachel Wittrock
Reporter staff
Did you know that 3 million Americans, and 65 million people worldwide, are living with epilepsy? In the United States, one out of every 26 people is living with epilepsy. Although it affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined, it receives fewer federal dollars per patient, according to www.cureepilepsy.org.
Lily’s Fund for Epilepsy Research is working to change that. On Saturday, Jan. 24, beginning at 6:30 p.m., the non-profit will host its annual fundraiser, Lily’s Luau, at Union South, Varsity Hall, located at 1308 W. Dayton St. in Madison.
Grass skirts, coconut bras, leis, flip flops and Hawaiian shirts are all the rage at Lily’s Luau. Attendees can enjoy tropical drinks, coconut shrimp, delectable desserts and other Hawaiian themed treats. This year’s event will include mobile bidding on a variety of donated items; a 20/20 raffle, with a grand prize of a one-carat diamond or $4,000 in custom jewelry from William Fuhrmann Custom Jewelers, and an update on upcoming Lily’s Fund activities.
Attendees will also be able to use their mobile phones to bid on a large variety of auction items, which include: a Disney vacation with a one-week stay in a Kissimmee condo, plus four passes to Disney World during the week of March 29-April 5, 2015; an electric Vibe bike, donated by Crazy Lenny’s E-Bike; Door County weekends; restaurant gift cards; summer pool parties at Seminole and West Side pools; original artwork; handmade furniture; electronics, including an Xbox and 32-inch TV; and food items, such as cases of wine, a cheese collection and half a lamb.
Every auction item has been donated by individuals, organizations or businesses, which allows every dollar raised to support epilepsy research.
Why should someone come to the event? Lily’s Fund founder Anne Giroux turned to her friend Tess O’Brien, whose daughter Meg has epilepsy, for the answer.
“Lily’s Luau has to be the only place you could go where you’re proud to put on a purple lei and announce that you have epilepsy. It is seriously empowering for my kid!” O’Brien said.
To register for this year’s event, go to www.lilysfund.org/lilys-luau/ and click on the Register Now button at the top of the page.
Lily’s Fund origins
Lily’s Fund for Epilepsy Research was established in 2007 by husband and wife Anne and David Giroux in honor of their daughter, Lily.
“When she was first diagnosed, we felt lost. When life settled and we found our new normal, we wanted to honor her and all the people who live with epilepsy by starting a fund to support epilepsy research at the UW,” Anne Giroux said in a Jan. 8 email to The Edgerton Reporter. “While Lily is the inspiration, Lily’s Fund now has grown tremendously into a huge grassroots movement with hundreds of volunteers working to bring epilepsy out of the shadows and into the spotlight.”
To date, Lily’s Fund has raised approximately $700,000 to support epilepsy research at the UW.
Partnering for an epilepsy-free future
Lily’s Luau is more than just a fundraiser for epilepsy research at the UW. It also brings together those affected with epilepsy and their families with the UW’s top researchers, including Avtar Roopra and UW Health neurologist Rama Maganti.
Within four years, Lily’s Fund grew to the point that the first ever Lily’s Fund Fellowship was created.Dr. Elizabeth Hutchinson served as the first Lily’s Fund Fellow from 2011-2012. She researched finding markers in the brain that can predict epilepsy.
In 2013, Lily’s Fund announced Brandon Wright had been hired as the 2013-14 Lily’s Fund Fellow. That same year, Lily’s Fund announced a new funding initiative, Grace Grants. According to www.lilysfund.org, “Grace Grants should foster innovative research that, if successful, will enrich our understanding of epilepsy, advance new epilepsy treatments, identify new diagnostic tools or otherwise improve quality of life for those who live with epilepsy. A priority will be given to new projects that spark new thinking and open new avenues of inquiry into the mechanisms of epilepsy.”
It was at last year’s luau that Dr. Giulio Tononi was announced as the first recipient of a Grace Grant, worth $100,000. His research, which began in June of 2014, will test if high-density electro encephalograph (HD-EEG) technology can be used to identify the focal point of seizures in the brain, as well as calculate the seizure’s pathway.
According to www.lilysfund.com, “Locating the point of origin is critical for patients preparing for brain surgery. A traditional EEG does not show enough detail, so an intracranial EEG is used. The electrodes are placed directly on the brain, which increases the risk of infection and other complications.”
The announcement of a new fundraising venue, the Neuron Project, was also announced at last year’s luau. Lily’s Fund teamed up with the Boldt Company and artist Piper Vollmer to create a stunning display, which was installed at the Wisconsin Institutes of Medical Research last March.
The contemporary art installation honors the one in 26 people who are living with epilepsy, while also funding critical research. The project was underwritten by The Boldt Company, allowing every cent of the neuron sponsorships to be used for epilepsy research. To date, $112,000 has been raised for epilepsy research through the Neuron Project.
During this year’s fundraiser, Lily’s Fund will announce its 2015-16 Fellow, as well as announcing a new $100,000 research grant, according to Anne Giroux.
“It is a fun and joyful event in the pursuit of a cure for epilepsy. In the middle of a Wisconsin winter, here’s a midwinter luau with hundreds of friends, where grass skirts and winter boots go together. The event is casual, relaxed and the coconut shrimp is out of this world,” Anne Giroux said.
