I wanted to do a career at a non-profit organization for very personal reasons. I know firsthand what a parent goes through when a child is diagnosed with a life-long chronic illness. I know how helpless you can feel when searching for research or resources in those early days and that a community of people dealing with the same issues and offering support can be a lifeline. After my own child was diagnosed nearly seven years ago with Type 1 Diabetes, a non-profit organization helped us immensely and I’ve often thought about what I could do to pay that forward.
Then I met Anne Morgan Giroux, founder and director of Lily’s Fund, an epilepsy research foundation, and began working with her for my 23rd and final career of this project. My time with Anne was so inspiring. Anne took the difficult situation of having a young child diagnosed with epilepsy and turned it into something quite amazing.
In 2008, Anne saw a story in the newspaper about UW-Madison researchers that were working on a cure for epilepsy and she wanted to help. Lily’s Luau started out as a grassroots effort of friends and family to raise enough money to keep that research going. Having a luau in Madison, Wisconsin in the month of January that first year was worrisome, but it was the only time frame that the venue was available. Amazingly, even in the frigid winter temperatures, 200 people came out in Hawaiian shirts (and grass skirts!) and raised $16,000. The next year, both the attendance and amount raised more than doubled and it’s just kept growing since.
Now, eight years later, it’s turned into a huge event with nearly 800 people raising over $185,000 this past January! All of the money goes right into funding research at UW-Madison in the effort to find a cure. It’s takes over thirty planners, a hundred volunteers and many businesses and individuals wanting to help – and it’s a great story of a small charity making a big impact.
What I experienced was a community of people who are incredibly passionate about what they do! The advancements they’ve been able to make with a concentrated effort into the most promising research is changing the future of this disease. Currently, seizures kill more people than breast cancer, but they are working hard to change that. I was there when one of the researchers shared the latest developments, which was nothing short of awesome. They think that they’ve actually found the “master regulator” that can be targeted in some way to stop the progression of epilepsy. That could be the vital information needed in the treatment and outcome of this disease.
Anne’s advice to me about starting a non-profit organization of any kind was fantastic. “Be clear in what you want to accomplish. Be clear in who you are as an organization. Don’t ever change what makes you unique.” She also added that there are community foundations out there that can help you and to be open to those offers when you get them. She also gives credit to the many volunteers that are a big part of making it all a success. Along with the Luau, Lily’s Fund has also developed an organized “Purple Day” epilepsy awareness campaign and The Neuron Project art installation for further funding opportunities.
My experience with this career was eye-opening and wonderful. I think that we all want to help various causes and charities in some capacity, but we don’t really know where to begin. How do you start a non-profit? How do you make a difference? It’s easy to get overwhelmed and think it’s just too big for one person. Maybe it isn’t. Lily’s Fund all started with one mom who has a child with epilepsy and a focus on the goal to find a cure.
I feel completely blessed that Anne invited me to hang out with her and learn first-hand about what she does. She’s a great resource and an amazing person and it was a perfect way for me to finish up my 23rd career of this past year. While I’ve been giving a lot more thought to what these career experiences have meant to me and building my future plans, being part of this organization feels like it will stay with me for a long time.