In 1981, Susan Axelrod was a young mother tending to her seven-month-old baby, A doted-on firstborn. The baby, Lauren, was healthy and bouncy—and then one day she developed a cold. The next day, Lauren had a seizure, and another and another. The epileptic seizures, which continued for 18 years, caused significant developmental delays, and no cause has ever been identified. The lives of the Axelrod family changed forever.
Julius Caesar is said to have been afflicted with epilepsy, yet more than 2,000 years later, the disease remains in large part a mystery. Today more than 3 million Americans suffer from the seizure disorder, which has been called the neglected stepchild of neurological diseases. It causes 50,000 deaths a year in the United States—about the same as breast cancer. For decades, medical research has been dedicated to developing anticonvulsant drugs to control epilepsy rather than to finding a cure, but the drugs can cause serious side effects in some patients while giving others no relief. “Eventually, I realized that the parents and the patients are the ones who have to make some noise,” says Axelrod, whose husband, David—Lauren’s father—is a senior Obama adviser.
In what she calls “a burst of passion,” Axelrod and several other parents—all frustrated by their inability to protect their children from the devastation of seizures and the side effects of medicines—sat around her kitchen table and formed a foundation. “I said, ‘Let’s name it after what we really want,’” she remembers, and so, in 1998, CURE—Citizens United for Research in Epilepsy—was formed. Its mission: to raise funds for medical research and to increase awareness of epilepsy’s prevalence and impact.
“Every advocacy group is looking for a cure for something,” says Axelrod, 57, who is the nonsalaried chairwoman of CURE’s board, “but it was incredible to me that basic questions—Why do seizures start? What happens to the brain in between seizures?—weren’t being raised as valid research topics.” Much of that has changed thanks to CURE, which has grown into a national organization now headquartered in Chicago’s River North neighborhood. In 2000, CURE, together with the National Institutes of Health, cohosted a conference dedicated to finding a cure for epilepsy. “Five hundred scientists came who had never thought about a cure for, rather than management of, the illness,” says Axelrod. “It completely changed the whole paradigm.”
Since then, CURE has helped increase federal funding for epilepsy research from $68 million to more than $100 million annually. It has also raised more than $15 million in private donations for seed money for grants to both young and established researchers. To date, CURE has funded more than 100 cutting-edge projects.
Lauren Axelrod, now 29, has been on medicine that has kept her seizure free for the past ten years, and her parents see her beginning to regain some lost ground. She lives in a residential home for adults with developmental disabilities. “It’s a long, hard road for anyone with epilepsy,” says Axelrod, “but we want to help people and their families. All this attention for epilepsy is long overdue—but certainly heartwarming.”
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