Living Well With Epilepsy invited 30 bloggers, advocates. foundations and others to participate in a month-long Epilepsy Stigma Blog Relay during June 2015. Lily’s Fund is pleased to participate in this important and innovative awareness effort.
Lily is our first of three daughters. Now 20, she was diagnosed with epilepsy at age two. The day we received that diagnosis from the doctors was crushing. We knew nothing about the condition or the treatments. We were blindsided and numb.
Worse yet, we had no idea how to talk about what our family was experiencing. We found ourselves avoiding the “e-word” altogether, knowing it carried a boatload of preconceived notions and uninformed opinions.
In 2006, our local newspaper ran a story about epilepsy research at the University of Wisconsin-Madison. We were excited that our own university (we’re both alums, and Dave works on campus) was engaged in science that was near and dear to our hearts. When we reached out to the scientists involved, we found them to be downright personable (and appropriately irreverent), but nonetheless committed to their scientific pursuits. They approached serious science with a self-effacing attitude.
Based on that interaction, and with Lily as our inspiration, we quietly made a gift to the UW Foundation. Little did we to know that our low-key approach would change dramatically one day over a cup of coffee with family and friends. Like us, they were impressed to learn about meaningful research happening so close to home. Unlike us, they were convinced that Lily’s Fund had to go big.
Convinced that a special event was warranted, they asked, “What kind of event would reflect Lily’s personality?”
Our little girl loved to socialize, sing, and dance. Her given name evoked images of colorful flora. Thus, Lily’s Luau was born. The inaugural event in 2009 drew about 200 guests, netted $16,000, and brought our cause into the spotlight. This was not your grandfather’s charity fundraiser. Guests braved the January chill wearing coconut bras and grass skirts, and they loved every minute of it. Lily’s Fund quickly earned a reputation for its quirky approach to an issue that had previously been cloaked in darkness and shame.
To be clear, this approach did not come naturally to us. It was born because so many loved ones lifted us up and showed us how to speak with conviction and humor about a difficult topic.
Fast forward to 2011. Fueled by the growing success of the annual Luau, and buoyed by the work of an army of volunteers, Lily’s Fund found a way to underwrite an epilepsy researcher through the first-ever Lily’s Fund Fellowship.
By 2013, our little grassroots organization was awarding $100,000 Grace Grants, named in honor of another young lady who lives with epilepsy. Fittingly, the official grant application encourages all researchers to demonstrate not only their academic prowess, but also their ability to whistle a jaunty tune. The latter requirement being one of dear Grace’s most endearing talents.
In keeping with those dear friends who first encouraged us to think big, we kept looking for ways to spread the word, shine a light on epilepsy and counteract the pervasive stigma that surrounds this condition. After all, the more comfortable people feel talking about it, the more likely they are to fund the research.
More than 80,000 fans packed UW’s Camp Randall stadium on Nov. 29, 2014 to watch the Badgers earn a win over the Minnesota Golden Gophers. On a chilly winter day, the game featured a heartwarming victory for people who live with epilepsy, as UW Athletics partnered with Lily’s Fund on a groundbreaking awareness effort. On game day, players and coaches from both teams wore purple “1 in 26″ decals and patches. Scoreboards and monitors throughout the stadium carried educational messages, and fans were encouraged to learn more online.
In the second quarter, UW mascot Bucky Badger offered this lesson about the prevalence of epilepsy:
Equipped with 10,0000 purple bandannas and towels, the signature “Jump Around” celebration took on a distinctively purple hue in the student section.
Earlier this year, the 2015 edition of Lily’s Luau welcomed 700+ guests and raised more than $145,000. One very special guest, opera diva Kitt Foss, bravely shared her personal epilepsy story and her inspiring vocal talents.
Today, we say “our search for a cure is a joyful pursuit.” Our epilepsy journey did not start that way. We haven’t always felt so happy, and our unbridled optimism will never displace the serious concerns we have about Lily’s health. But we’ve learned that people are eager to join an organization that has fun, no matter how serious the topic. In the process we encourage an open, comfortable dialogue about epilepsy.
If one only listened to the pre-fight rants of boxer Mohammad Ali, one might underestimate his true power. Ali once said of his infamous self-aggrandizing patter, “It’s the repetition of affirmations that leads to belief. And once that belief becomes a deep conviction, things begin to happen.”
We are happy to repeat our message to any and all who will listen. We believe that this repetition is already sparking belief and stirring the embers of conviction. And we believe, with all the joy we can muster, that good things are going to happen!
Anne and Dave
co-founders, Lily’s Fund