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spirit of generosity a reason to hope AN "AUDACIOUS" REQUEST UNITES A CARING MUSICIAN WITH A CURE. by susan axelrod H ow can I describe the single most defining event in my family's life? If I told you about the morning I found our first-born child, Lauren, lying blue and limp in her crib after what I soon learned was a night filled with seizures, that would only be the beginning. Or, what if I told you about the 23 medications that failed to control the relentless seizures, their horrific side effects, the never-ending hospitaliza- tions and treatments, the seven holes doctors drilled in her skull to determine if they could operate on her brain, only to conclude it would not be possible? I could describe the days Lauren would suffer dozens of seizures, waking up in between only long enough to feel another one coming on, screaming out in terror, "Mommy, make them stop!" And I couldn't do a thing. What if I told you about watching her develop- ment deteriorate as the seizures and medications wreaked havoc on her behavior and her ability to learn, and how it felt when she moved into a sup- ported-living arrangement 10 years ago because of the residual damage of all those seizures? I still don't think I would have adequately described the potential devastation of epilepsy, and how repeated, uncontrollable seizures rob children of their potential—and parents of their dreams and hopes. Epilepsy affects millions. One in 26 Americans will develop it at some point in their lives, with the highest incidence in childhood and in senior citi- zens. There is a huge spectrum of impact—so some can live their lives with minimal disruption, but many are like Lauren—or worse. Tens of thou- sands lose their lives each year. 70 michiganavemag.com " Epilepsy has not had a public spokesperson. That's why, in 1998, I founded CURE. " But epilepsy has not had a public spokesperson, so very few whose lives are not directly affected realize what a major personal and public health problem it is. That is why, in 1998, I founded CURE (Citizens United for Research in Epilepsy). To date, we have raised more than $18 million for epilepsy research. This year, we are thrilled and honored to have acclaimed songwriter, performer, and author Carole King joining us for our Annual Benefit on June 15 to help raise the funds we desperately need—funds to support the research critical to finding a cure. A lifelong fan and admirer, I was thrilled to meet Susan (left) and lauren axelrod Carole at an event in Washington two years ago. The last thing I expected was for her to already know about CURE and our personal story. I was stunned and touched. She invited Lauren and me to her Troubadour Reunion Tour with James Taylor at the United Center, which turned out to be the most memorable mother/daughter experience we've ever shared. Music always has played a major role in Lauren's life—she loves listening and even performing in the choir at Misericordia, where she now lives. Carole included us in the pre-show sound check and invited us to a personal backstage visit after the concert. So when I reached out with what I knew was an audacious request for her to perform here in Chicago, her response took my breath away: She said, "I'd love to." We know her involvement will be enormous for this cause. of epilepsy. We are beginning to unravel the mysteries Incremental advances and our continued on page 72 photography by david w. johnson; hair and makeup by frances tsalas at chicagoemergingartists.com; styling by jacki debb at chicagoemergingartists.com. susan's dress, jenny han ($194); lauren's dress, rebecca taylor ($250). neiman marcus, 737 n. michigan ave., 312-642-5900; neimanmarcus.com