Lily’s Luau celebrates its tenth and last year, looks to the future

June 12, 2017 GMT

Lily’s Fund, which raises money for epilepsy research at UW-Madison, will be hosting Lily’s Luau in January for the 10th and final time.

It is the organization’s goal to raise $200,000 at the final event, which would yield a total of $1 million in their fund and provide ten years of grants.

Lily’s Luau is the brainchild of parents David and Anne Morgan Giroux, whose daughter, Lily — now a 22-year-old Madison resident and University of Iowa alumna — was diagnosed with epilepsy as a child. Both UW-Madison graduates, they wanted to make a longstanding impact on epilepsy research.

Ten years ago, brainstorming in a cafe with friends and family, with years of experience in nonprofits and marketing between them, an annual luau set in the middle of a Wisconsin winter seemed like the best fit, Anne Morgan Giroux said.

“We all rolled up our sleeves, without knowing what we were doing,” she said.

They raised $16,000 at their first event, with 200 people in attendance, and from then on, the luau’s influence only grew.

Nine years later, the fund has supported multiple fellowships and projects. Projects have involved studying the connections between sleep deprivation and epilepsy, or using certain technologies to identify a seizure’s pathway in the brain. These projects are funded through Grace Grants, $100,000 grants within the larger fund that are awarded to specific research proposals related to epilepsy.

Grace Grants or other special grants from the Fund are important for epilepsy research because they often provide seed funding for the crucial early stages of research, Giroux said. The results can often provide the necessary data for UW-Madison researchers to apply for additional grants, whether through private organizations or public research centers like the National Institutes of Health.

For example, Avtar Roopra, who received a $100,000 grant from Lily’s Fund in 2015, used the support to study the role of genes in epilepsy’s development, according to the Lily’s Fund website. This research led to three more grants — two through the National Institutes of Health and one through Citizens United for Research in Epilepsy, for total funding of $1 million.

The Grace Grants are inspired by Grace Penwell, the daughter of Colleen and David Penwell, who the Girouxs met at the first luau. Since then, the Penwells have played a critical role in planning and supporting the event. Giroux and Colleen Penwell refer to themselves as the fund’s “co-pilots.”

‘The Wisconsin Idea’

The event is planned and coordinated by “hundreds” of volunteers, Giroux said, both months before the event, and on the day itself. Connie Chesnik, whose daughters used to babysit Grace, has been volunteering for the event for the past several years. She calls it a “perfect example of the Wisconsin Idea.”

“With all the money staying local, and the possibility that a cure could be found in our own backyard, being a UW graduate myself, that has always been important to me,” Chesnik said.

At the 2017 luau, the Girouxs were able to raise a net amount of $185,000, with more than 700 people in attendance.

“It feels like the right time” to end the luaus, Giroux said. “Putting a million in the bank seems like the right way to end on a high note, and finish strong.”

They plan to continue writing grants, getting sponsors and developing different events for the future. For instance, Lily’s Lemonade Stands allow community supporters to raise money for the funds in their own front yards, and in a new effort called Lily’s Fund Night at the Mallards, a portion of ticket sales will contribute to the fund.

The founders have decided to discontinue the Lily Fund Fellowship in favor of focusing on larger projects.