One in 26 people will develop epilepsy during their lifetime! That’s about one child in every classroom. They are our coworkers, clients, family and friends. More people suffer from epilepsy than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s Disease COMBINED, but epilepsy funding is less than half of any one of them. Seizures affect our families, friends, neighbors, seniors, military veterans, infants and children … including a teenager named Lily.
With her as our inspiration, Lily’s Fund is working to bring epilepsy out of the shadows and into the spotlight in hopes of more investment in research, both private and public here at the UW-Madison.
In just five years, Lily’s Fund for Epilepsy Research has grown tremendously. Volunteers, donors, businesses have all have rallied around the cause and the need to support funding for more research and increase awareness about this devastating condition.
Who are your staff and volunteers?
Lily’s Fund is dependent on volunteer staff and advisory committees. We currently have a full event committee who oversee every aspect of our main fundraising event, Lily’s Luau. We also have a scientific advisory board consisting of key researchers and physicians to guide us on research funding. And 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.
How efficient is your organization?
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 paid staff, office space, equipment, etc.) and a large enthusiastic volunteer base, Lily’s Fund events and programs are funded through sponsorships, grants and donations.
Are you a 501(c)3?
Lily’s Fund for Epilepsy Research is housed at the UW Foundation, a 501(c)3 organization. Why did we structure ourselves this way? All of us at Lily’s Fund are volunteers with a passion to find new treatments and cures for epilepsy. While we could have started a new non-profit through the IRS, we decided that our priorities were to raise awareness of, and raise research funding for, epilepsy. Becoming an individual agency requires extensive time spent on paperwork and administrative duties. The UW Foundation, an established investor and overseer of our funds, allows us to focus on our work at hand, making us a more efficient, effective and trustworthy organization. We believe this innovative approach could be a model for other nonprofits.