Q: How did you react when you were first told of Lauren's diagnosis?
Lauren was initially diagnosed with an Idiopathic Seizure Disorder. It was three years before the word epilepsy was even mentioned. I was looking at an EEG report and it said something about epileptic activity. I panicked and wondered, 'Does she have epilepsy and a seizure disorder?' Nobody had used the word epilepsy in three years. I had no idea how this diagnosis, her epilepsy, would come to define every day of her life from that point on.
Q: Over the last decade has the original mission of CURE changed?
When we first began CURE, our mission was solely focused on research toward a cure. But we were quickly struck by how many people thought that epilepsy had already been cured or did not realize it could be so devastating or life threatening. So, we revisited our original mission early on and realized that to raise both public and private funds we would have to work to increase public awareness of the prevalence and the devastation of the disease.
Q: As the mother of three children and president of an almost all-volunteer organization how have you found the time and strength to do this work?
Lots of passion—it's tiring, and progress can feel frustratingly slow, but I can't imagine anything more rewarding. Our message of finding a cure has resonated with so many others around the country, and banding together, we know we're not alone and that together, we can dream of and work toward this common goal.
We had tremendous support. Many of our friends and colleagues who knew about our daughter's situation, but had never felt there was anything they could do to help, came out in droves to lend their support.
In addition, I never anticipated the incredible generosity of the epilepsy scientific community. We have hundreds of scientists and clinicians who volunteer their time to review grant proposals for us and offer us general guidance. Their expertise, combined with our passion and drive, are a winning combination. Their support has been an amazing endorsement of who we are and what we are trying to accomplish.
Q: You speak frequently about how isolating it was for you and your husband when Lauren was growing up. How important is the role of community?
For Lauren's first ten years, my husband and I felt her situation was unique—that nobody else was struggling as much as we were. Though we were profoundly sad to learn there were so many others watching their loved ones' lives be destroyed, it was a watershed moment realizing we weren’t alone. Coming together with others, sharing experiences and knowledge and working together toward the goal of a cure has been one of, if not the most, meaningful pursuits of our lives.
Q: What are some of the challenges people with epilepsy and their caregivers are facing today?
The challenges are many. Particularly in childhood, epilepsy is so often accompanied by learning and developmental challenges, that families are dealing not only with trying to achieve seizure control with minimal side effects, but also having to learn to navigate educational and other support systems for their children.
The impact of epilepsy can vary greatly—it is very much a spectrum in the same way that autism is—and yet so little is understood about its cause, the best treatments or prognosis. Families often feel they are alone.
The one thing that we can, and should all rally around—regardless of the degree of impact or the age of the patient—is that we need more research so that more patients can achieve seizure freedom and reduced or hopefully no side effects from treatment.
Q: You and your husband are both very active, how can people get involved to help?
We recently developed a Community Tool Kit, a guide designed to empower individuals to take an active role and join this grassroots effort to raise funds and awareness for research. The Took Kit outlines the main steps of planning, organizing, and carrying out a successful fundraiser to benefit CURE—whether it be a small community event like a bake sale or garage sale, or a large gala affair like a dinner auction or concert. The guide offers advice on everything from organizing volunteers, to day-of-the-event logistics, to reaching out to the press to raise awareness. For more information, call 312-255-1801.
Q: In 2009 what is the foundation looking to do?
We are always looking for opportunities to 'push the envelope' and be creative with our funding. We are particularly interested in supporting cutting-edge, innovative approaches, bringing in people from outside the field and taking fresh new looks at what we know and what we still need to know to solve this puzzle.
In addition, we are embarking on a more aggressive awareness campaign to further spread our message of the need for a cure, and to increase support so that we can continue to fund even more of the desperately needed and long-overdue research into finding a cure. Particularly in these tough economic times we need more families around the country to get involved in their own efforts to raise money for research—of every dollar donated to CURE, over 95 cents is invested in epilepsy research.
One of the hardest things we have to do is to turn down promising research projects because we simply don't have the funds to support them—but together, I'm convinced we can continue to take great steps and ultimately find a cure.