Well-connected advocate pushes for epilepsy aidSusan Axelrod does not like that her husband is rarely home to enjoy their high-rise condominium along Chicago’s lakefront, that he is constantly tired or that strangers now approach them almost everywhere they go. Still, there are perks to being the spouse of President Barack Obama’s top political guru, like getting to attend a recent Stevie Wonder appearance at the White House. For Susan Axelrod, however, one benefit easily outweighs all the others.
By: John McCormick, Chicago Tribune
CHICAGO — Susan Axelrod does not like that her husband is rarely home to enjoy their high-rise condominium along Chicago’s lakefront, that he is constantly tired or that strangers now approach them almost everywhere they go.
Still, there are perks to being the spouse of President Barack Obama’s top political guru, like getting to attend a recent Stevie Wonder appearance at the White House. For Susan Axelrod, however, one benefit easily outweighs all the others.
“I’m hoping all this publicity we have had will help open doors,” she said in the River North office that used to be her husband’s. “It’s long overdue for this disease.”
That disease is epilepsy, an ailment that first struck David and Susan Axelrod’s daughter more than a quarter century ago, forever changing all of their lives.
As her husband works in Washington, Susan Axelrod continues to spend much of her time supporting the Chicago-based charitable organization she and two other mothers founded in 1998 to promote epilepsy research and education.
The national profile of Citizens United for Research in Epilepsy (CURE) has already been boosted by the couple’s newfound fame, landing Susan Axelrod recently on the cover of a Sunday magazine and on network television talk shows.
In the coming months, Susan Axelrod also plans to spend more time lobbying on Capitol Hill for additional federal research funding.
An annual fundraising dinner in Chicago for 750 people on a recent Friday evening, meanwhile, sold out faster than ever before, as business and political leaders snapped up a chance to support a cause central to one of Obama’s top aides.
This year’s gathering at the Field Museum will be headlined by Tom Brokaw, the former “NBC Nightly News” anchor. It is expected to raise at least $600,000, adding to the $9 million the group has raised for epilepsy research and other initiatives since its inception.
Reflecting the couple’s political ties even before Obama’s rise, past speakers have included Hillary Clinton (when she was first lady), former President Bill Clinton, Obama (when he was a senator), and “Meet the Press” host Tim Russert, who is now deceased.
“The more notoriety the disease gets, the better off people in the epilepsy community will be,” said Debbie Flader, a Hanover Park woman who was one of CURE’s founders. “Just having the connection (to the Obama White House) will benefit us.”
The Axelrods became active on the issue after their daughter, Lauren, suffered irreversible brain damage following epileptic seizures. She was 7 months old when the seizures started one night as the child lay in a crib suffering from a cold.
Early on, the couple did not know much about seizures, which are reactions to abnormal electrical activity in the brain.
Lauren’s seizures lasted nearly two decades, sometimes arriving at a rate of two dozen a day. As a child, she would sometimes cry, “Mommy, make it stop.”
Now 27, Lauren lives at Misericordia, a Chicago facility for children and adults with developmental disabilities. She is the oldest of three children.
Susan Axelrod said she suspects anxiety about her husband’s absence has translated into more frequent phone calls from daughter to mother.
“She wants to know where I am,” Susan Axelrod said, noting how on a recent day, in the span of an hour, her daughter left six messages on her land line and two on her cell phone.
Since the inauguration, Susan Axelrod has spent her time roughly divided between Chicago and Washington, where her husband rents a two-bedroom apartment. Crew members on United Airlines flights between the two cities are starting to recognize her.
Since she also helps care for her 92-year-old father, Susan Axelrod said she needs to be here much of the time. She confesses to sometimes feeling as if the circus has left town without her, but said she suspects she would have a hard time moving to Washington.
“I get here and it is so nice to be away from it,” she said. “That whole bubble thing is really true.”