David and Susan Axelrod have been fighting epilepsy through the organization they founded with other parents, CURE Citizens United for Research in Epilepsy. David, Obama's adviser, keeps a painting that his daughter Lauren made for him in the West Wing.
Parade: Susan began to meet other parents living through similar hells. They agreed that no federal agency or private foundation was acting with the sense of urgency they felt, leaving 3 million American families to suffer in near-silence. In 1998, Susan and a few other mothers founded a nonprofit organization to increase public awareness of the realities of epilepsy and to raise money for research. They named it after the one thing no one offered them: CURE--Citizens United for Research in Epilepsy.
"Epilepsy is not benign and far too often is not treatable," Susan says. "We wanted the public to be aware of the death and destruction. We wanted the brightest minds to engage with the search for a cure."
Then-First Lady Hillary Clinton signed on to help; so did other politicians and celebrities. Later, veterans back from Iraq with seizures caused by traumatic brain injuries demanded answers, too. In its first decade, CURE raised $9 million, funded about 75 research projects, and inspired a change in the scientific dialogue about epilepsy.
"CURE evolved from a small group of concerned parents into a major force in our research and clinical communities," says Dr. Frances E. Jensen, a professor of neurology at Harvard Medical School. "It becomes more and more evident that it won't be just the doctors, researchers, and scientists pushing the field forward. There's an active role for parents and patients. They tell us when the drugs aren't working."
The future holds promise for unlocking the mysteries of what some experts now call Epilepsy Spectrum Disorder. "Basic neuroscience, electrophysiological studies, gene studies, and new brain-imaging technologies are generating a huge body of knowledge," Dr. Jensen says.
Lauren Axelrod, now 27, is cute and petite, with short black hair and her mother's pale eyes. She speaks slowly, with evident impairment but a strong Chicago accent. "Things would be better for me if I wouldn't have seizures," she says. "They make me have problems with reading and math. They make me hard with everything."
By 2000, the savagery and relentlessness of Lauren's seizures seemed unstoppable. "I thought we were about to lose her," Susan says. "Her doctor said, 'I don't know what else we can do.'" Then, through CURE, Susan learned of a new anti-convulsant drug called Keppra and obtained a sample. "The first day we started Lauren on the medication," Susan says, "her seizures subsided. It's been almost nine years, and she hasn't had a seizure since. This drug won't work for everyone, but it has been a magic bullet for Lauren. She is blooming."
