Lily’s Luau brings business community together to help fight epilepsy

What could possess grown men to wear grass skirts and Hawaiian shirts in Wisconsin in the middle of January? Answer: The same thing that could inspire an entire dental office to wear purple one day a week throughout the year.

The common thread, so to speak, is epilepsy awareness, but the real answer may be parental love and community support.

For Dave Penwell, these particular sartorial adventures began three years ago, when he attended his first Lily’s Luau, an annual fundraiser for epilepsy research that had been launched the year before by Madison’s Dave and Anne Giroux, whose daughter, Lily, suffers from the condition.

“A friend of ours invited us, a co-worker of Dave’s, because he knew our daughter Grace had some severe epilepsy issues, so we went, and [my wife] Colleen and I just looked at each other and said, wow, this is us. This is for us, and we’re going to stroll right up and introduce ourselves to the Girouxs and see what they can do to help,” said Dr. Dave Penwell, a dentist with First Choice Dental and one of the co-organizers of Lily’s Luau and Lily’s Fund.

By all appearances, it was the beginning of a beautiful friendship (according to Penwell, Colleen and Anne now refer to themselves as “Thelma and Louise”), but more importantly, it’s been a productive partnership. The first Lily’s Luau, in 2009, attracted about 250 attendees, had no sponsors, and raised $16,000. Last year, 500 people attended and the event raised $90,000. The fifth annual Lily’s Luau, scheduled for Jan. 26 at Union South, has already attracted 40 sponsors, and Penwell projects that it will attract more than 600 people and raise approximately $100,000.

The contribution from Madison’s business community has been significant, starting with Penwell’s own employer.

In addition to contributing as a corporate sponsor, First Choice Dental encourages its employees to wear purple scrubs and outfits on Thursdays to get people thinking about epilepsy and the need for further research.

“We have eight offices in the Madison area, and Thursday is kind of designated as purple day, because purple is the color for epilepsy awareness,” said Penwell. “Patients ask about it. They say, ‘Why are you wearing purple?’ It just seems like an odd color. It sticks out, and the front desk wears purple. It definitely starts a dialogue with people, and it’s really gratifying to hear people talk about it.

“And you know, epilepsy is a tough condition because people don’t like talking about it, and when they see a seizure, it’s [upsetting]. But the more people are aware of it, the more they start talking about it.”

Awareness and action

That dialogue is vital, say supporters of epilepsy research, because the condition is often underestimated and misunderstood. The Centers for Disease Control and Prevention reports that epilepsy affects 2 million Americans, and one in 26 people will be diagnosed with epilepsy at some point in their lives. According to information provided by Lily’s Fund, the condition affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. In addition, you can develop it at any time with no family history, and fully one-third of victims cannot control their seizures with medicine.

In addition to making people more aware of the prevalence of epilepsy and the challenges epilepsy presents, Lily’s Luau is raising much-needed funds for research. The money goes toward a research fellowship at the University of Wisconsin. Beth Hutchinson, the first fellow funded through charity, studied brain markers related to epilepsy and made considerable progress with her research. Currently, the organization is looking for a new research fellow after Dr. Hutchinson’s move to Washington, D.C.

To Penwell, the fact that all the money stays in the community is a point of pride – as well as a potential draw for donors.

“You know that the money that you donate to our organization, or the luau, is going to be kept local, and I don’t think that can be said of a lot of fundraising activities that go on in Madison, or anywhere,” said Penwell.

Apparently, many local businesses are convinced. Among Lily’s Luau’s corporate sponsors are heavy hitters like First Choice Dental, Dean Clinic, American Family Insurance, Pfizer, Associated Bank, and Park Bank.

Indeed, some of the charity’s major sponsors have been particularly creative about raising funds, as well as awareness.

“Findorff was doing a big project on campus, and one of the lead project managers went to his superiors and said, ‘what about all those contractors that come and bring all their employees – construction, electrical, plumbing, and all that? What if they donate $5 each person and we buy them lunch, and all the money we raise will go directly to Lily’s Fund?’” said Penwell. “They elevated the talk about it among the construction people, and it was a grassroots thing where they said, ‘Let’s see what we can do to support this.”

The long haul

Of course, few things could grab people’s attention as much as men dressed in coconut bras – a not infrequent occurrence at Lily’s Luau, according to Penwell. Then again, this is far from a fly-by-night spectacle that’s forgotten as soon as the last lei is tossed in the closet. According to Penwell, this is an event that’s planned and refined all year long, and one that he and his co-organizers plan to see through as long as the need remains.

“I don’t know if we consider the fifth year to be a milestone,” said Penwell. “I think we’re more into the longevity of it. Epilepsy is not going away. The research should never go away, and we want to make people aware that epilepsy and its ramifications on people and society aren’t going away.

“Nobody ever says, let’s do this for five years and be done, let’s do this for 10 years. I think we’re in for the long haul. And the number of people who have come forward and said, I want to be involved – my daughter has epilepsy, my uncle has epilepsy – they don’t want to see it go away either, because they’ve seen the stigma of epilepsy and how tough it has been on their lives, and they want to make sure that people are aware of epilepsy so it comes out in the open more.”

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