David Axelrod, President Obama’s chief political strategist, and his wife, Susan, will be in Boston
on Wednesday to cochair a fund-raiser for CURE,
Citizens United for Research in Epilepsy. Susan cofounded the nonprofit in 1998, because their daughter, Lauren, was left developmentally disabled by epileptic seizures. The event is cochaired by Anne Finucane, global strategy and marketing officer at Bank of America, and her husband, Mike Barnicle; their daughter has epilepsy.
Q. Tell me about Lauren’s journey with epilepsy.
Susan: Lauren is 31 now. When she was 7 months old, she had her first seizure, of thousands. I had no idea what epilepsy was, how a totally healthy baby can be put to bed one night, and then have her life permanently changed. We went through more than 20 different drugs, brain surgery, brain stimulation, special diets, none of them successful. One of the miracles was that at age 18, she responded to a new medication and has been seizure-free since.
David: It’s important to note that she functions like an early adolescent. But we’re lucky. Many of the friends we’ve met have lost their children; 50,000 people a year die from epilepsy.
Q. How was CURE started?
David: Susan and two other moms started this at the kitchen table. And now it funds research all over the world.
Q. David went on “Morning Joe” on MSNBC and promised to shave off his 40-year-old mustache live on TV if you can raise $1 million for CURE by the end of November. Really?
David: It followed from a bet I made with Joe [Scarborough] before the election [that Axelrod would cut his mustache on TV if Obama lost Michigan, Minnesota, or Pennsylvania]. I won it, and it called for Joe to grow a mustache. In exchange for letting him out of his obligation, we launched this Slash the ’Stache campaign to raise $1 milllion, with the first $10,000 donated by him.
Q. How much have you raised?
David: About $600,000 so far.
Q. Susan, you have never seen your husband without a mustache. What if you don’t like the way it looks?
Susan: He can always grow it back.
David: This is a risky proposition, but the cause is worth it.
Q. What does CURE do?
Susan: What distinguishes us is that we are exclusively about research. We are headquartered in Chicago but we fund research in nine countries.
David: Part of the problem is that the epilepsy research kept plowing the same ground. It was hard to get cutting-edge ideas funded. I’m absolutely convinced that what started at the kitchen table will lead to a profound new understanding of and approaches to epilepsy.
Q. Is the federal government doing enough?
David: I think we should be doing more, and more medical research generally. This was an issue in the last [presidential] campaign, and I believe deeply in that. What we need to do is make sure the National Institutes of Health are presented with promising new approaches that they’re willing to invest in. CURE is an incubator for those ideas.
Q. What is the incidence rate of epilepsy?
Susan: The Insitute of Medicine says 1 in 26 Americans will develop epilepsy. There’s a growing number of senior citizens, due to brain tumors and stroke. There are also head injuries, including a good number of our veterans, who develop post-traumatic epilepsy.
Q. David, you have described epilepsy as “terrorism of the brain.” Why?
David: Because you never know when a seizure is going to strike. It can hit anytime, any place. To me, terrorism is fear of the unknown attack.
Q. How is Lauren doing today?
David: She lives in a place for people with developmental disabilities. She’s got jobs, she’s got activities and lots of friends. She’s made incredible progress. We’re grateful, but we’re still aware that every one of those days is a gift.
Q. You’ve been a senior White House adviser and campaign strategist for President Obama. What do you do next?
David: Now I’m director of the Institute of Politics at the University of Chicago, half time. I’ll be writing and speaking the other half, and kibbitzing with the president when he asks for it.
Q. Do you have a message for Republicans now that the election is over?
David: One thing about having a child dealing with something like epilepsy, it does remind you there are bigger things even than politics. There are challenges that unite us as human beings. My message is let’s try to work together to solve those things that face us all.