About

About Lily's Fund

We are a volunteer-led nonprofit organization. Through the support of generous volunteers and sponsors, we celebrate and support epilepsy research at the University of Wisconsin-Madison.

The need is great

One in 26 of us will develop epilepsy in our lifetimes.

More people suffer from epilepsy than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s Disease combined, yet epilepsy research funding totals less than half of any one of those other conditions.

Seizures affect our families, friends, neighbors, seniors, military veterans, infants and children … including a teenager named Lily. With her as our inspiration, we bring epilepsy out of the shadows, in hopes of spurring more investment in research here at the UW-Madison.

Since its inception in 2007, Lily’s Fund for Epilepsy Research has flourished, thanks to the volunteers, donors, friends, and businesses who have embraced our cause.

Scientific Advisory Committee

We are excited to have the guidance and energy of our Lily’s Fund Advisory Board to help us create and implement a strategic vision for Lily’s Fund and future epilepsy research at the University. Committee members include:

  • Tracy Cabot, School of Medicine and Public Health
  • Shawn Guse, President/CEO, Intuitive Biosciences
  • Brad Jolin, UW Foundation
  • Rama Maganti, Professor, Neurology, UW-Madison
  • Anne Morgan Giroux, Lily’s Fund
  • Rick Moss, Associate Dean, School of Medicine and Public Health
  • Donata Oertel, Chair, Neuroscience
  • Bob Pearce, Chair, Anesthesiology
  • Colleen Penwell, Lily’s Fund
  • Avtar Roopra, Associate Professor, Neuroscience
  • Kathleen Shannon, Chair, Neurology

FAQs

How efficient is Lily's Fund?
With a grass roots approach to community relations and fundraising, Lily’s Fund is proud to donate 100 percent of proceeds to local epilepsy research. With virtually zero administrative or overhead costs (no salaried staff, office space, equipment, etc.) and a large enthusiastic volunteer base, Lily’s Fund events and programs are funded through sponsorships, grants and donations.
What are your goals?

Goal #1: Increase Awareness of Epilepsy
We do this through Purple DayLily’s Lemonade StandsLily’s Luau and other efforts.

Goal #2: Support Those Living with Epilepsy
Lily’s Friends is a group of parents who have children with epilepsy who meet regularly to share information and experiences, ask questions of each other, and find comfort knowing we are all comrades in the same battle.

Goal #3: Raise Money for Local Research
Our major fundraiser, Lily’s Luau, was first held on January 10, 2009. Over the seven years, the luau has more than doubled in attendance and quadrupled the money raised. This midwinter luau, where snow boots and grass skirts meet for an awesome evening of music, dancing, food and an auction, have had sell-out crowds of more than 700 people. Equally important, the event has increased awareness of epilepsy and the need for more research

Goal #4: Support Cutting-Edge Research at UW
In April of 2012, the Lily’s Fund Scientific Advisory Board met to create and implement a strategic vision for Lily’s Fund and future epilepsy research at UW-Madison. 

Who are your staff and volunteers?

Lily’s Fund depends on volunteer staff and advisory committees.

We currently have a full event committee comprised of volunteers who oversee every aspect of our signature fundraising event, Lily’s Luau.

We also have a scientific advisory board consisting of researchers, physicians and community leaders to guide our research funding. Finally, we have our core volunteers, the glue that keeps us focused and moving forward towards our goals. Throughout the course of a year, hundreds of volunteers are involved in some aspect of Lily’s Fund.

Is Lily's Fund at 501(c)3?
Lily’s Fund for Epilepsy Research began as an endowment housed at the UW Foundation, a 501(c)3 organization. Our focus is supporting UW research, so this provides the most direct, efficient way to channel resources to the university laboratories. When you click any of the “Give” or “Donate” buttons on this website, your donation goes directly into a designated fund at the UW Foundation, the established custodian of Lily’s Fund research dollars. Lily’s Fund for Epilepsy Research is also registered as a non-profit with the IRS.

We translate compassion into discovery

More scientific research will lead to new treatments, new diagnostic tools, and new hope for people living with epilepsy.