When Susan Axelrod found her seven-month-old daughter, Lauren, lying blue and breathless in her crib, she knew something was terribly wrong. She rushed to the emergency room where she discovered that her daughter had suffered a seizure—the first of many more to come.
When the seizures first started, Axelrod was finishing a business degree at the University of Chicago and her husband, David, was a reporter with the Chicago Tribune. (He is now best known as the chief strategist for President Obama’s 2008 campaign.) Those early years weren’t easy. “At one point, David was making a reporter’s salary and I wasn’t able to work because [Lauren] was hospitalized so much,” she remembers. Lauren’s medication alone cost them $1200 each month.
Doctors provided little solace. Though epilepsy affects over three million Americans and kills more people each year than breast cancer, doctors know little about the causes or course of the disease. For a full thirty percent of people with epilepsy, including Lauren, the seizures are uncontrolled, meaning that doctors are unable to treat them.
“I didn’t know what I was dealing with for years,” Axelrod says. “The doctors used to say, the causes are so bad that you don’t want us to tell you.” But no matter how scary, Axelrod wanted answers. “Knowledge is empowering even if [the answer is] that this isn’t known or understood.”
She began finding answers when she joined a parent support group, where she met other mothers whose kids were also struggling with uncontrolled seizures. “It was a lightning bolt moment,” she says. “Up until then, I thought Lauren was the only one.”
In the group, Axelrod met two other mothers who were equally frustrated with the lack of awareness and information about epilepsy. Together, in 1998, the three mothers founded Citizens United for Research in Epilepsy (CURE), a non-profit organization dedicated to funding cutting-edge scientific research and spreading awareness about epilepsy. “It was an attempt on all of our parts to create something that felt positive and forward-thinking out of something that had been a sheer force of destruction in our lives,” she says.
CURE was the first to suggest that a cure was even possible. “Before we came along, epilepsy research had always been about masking the symptoms without any concern about why they started or where they came from,” Axelrod says.
CURE’s message tapped into a void, giving voice to people struggling with a disease that is often unrecognized and misunderstood. “Our voices really started to resonate,” she says. They gathered an ever-growing network of dedicated supporters and were “immediately embraced by many of the established scientists in the field.”
Today, CURE has raised over 18 million dollars and has funded 116 research projects, including studies on epilepsy in soldiers returning from Iraq. Every study they fund explores the causes and course of the disease in the hopes of finding a way to prevent or reverse it.