Behind the scenes at the 2012 CURE Chicago Benefit - Boston News, Weather, Sports | FOX 25 | MyFoxBoston

Behind the scenes at the 2012 CURE Chicago Benefit

Posted: Updated:
CHICAGO (FOX 32 News) -

1 in 26. The Institute of Medicine estimates this to be the number of Americans who will develop epilepsy. One of the largest and most lucrative fundraiser's in search of a cure for epilepsy took place here in Chicago this summer, shattering the million dollar ceiling, and raised $1.1 million.

So what is epilepsy and how has this medical condition received such a prominent place in Chicago fundraising? Epilepsy is broadly defined by the National Library of Medicine as a brain disorder in which a person has repeated convulsions over a period of time because the brain sends out abnormal signals. The disturbed brain activity can cause changes in attention and/or behavior. And while epilepsy remains a puzzling diagnosis with little hope of a permanent cure much of the time, inroads are quietly being made. For example, patients with epilepsy whose seizures aren't controlled with medications may be helped by a high-fat, very-low-carbohydrate diet called a "ketogenic diet," nerve stimulation, biofeedback or surgery. By far, though, the most common way seizures are kept at bay is with medications. These developments are only made possible by funding. And that's what brought out the Chicago philanthropists and socialites to Navy Pier to attend the 14th annual Chicago Benefit for CURE (Citizens United for Research in Epilepsy). The history of epilepsy charity in Chicago is the story of a little girl and a mother desperate to help her. It's the story of Susan and her daughter, Lauren, which has been chronicled numerous times but still doesn't lose its poignancy. When Lauren fell ill at 7 months old, her parents were advised to give her a partial dose of an adult cold medication, after which incessant and intermittent seizures rocked her little body – and her parents' world – for years. The irony is that in later years, the FDA would come out and warn parents not to give their children over-the-counter adult strength cough and cold drugs because they contained substances that might be harmful. The guilty ingredients? Carbinoxamine, pseudoephedrine and dextromethorphan.

When little Lauren became one of roughly half a million children younger than 15 who develop epilepsy each year, Susan sprung to action. She co-founded CURE in 1998 and recruited to the cause A-lister elected official friends, celebrities and journalists. Her outreach and influence has paid off. In total, more than $18 million has been raised and 126 research grants have been funded by CURE. At this year's Navy Pier event that was headlined by legendary singer/songwriter Carole King, each attendee had his or her own personal reason for joining in the cause.

Tammy Duckworth, Democratic Congressional Candidate for Illinois' 8th district, is a veteran and head injury victim. "Ever since I became disabled, I became interested in any injuries that led to disability," she explained. "Brain injuries have led to a rise in epilepsy in our wounded veterans and I work with veterans groups."

John Rogers of Ariel Investments, said he has had a long term relationship with Susan and her husband, David. "I'm here to support them. And I love Carole King!"

Bob Beavers of Beavers Holdings told me "I'm here to support the cause of my close friends and to help the children affected by the disease. It's going to be a fun evening to be with a lot of friends."

Two of those friends, Western Springs middle-schoolers Jeffrey Vitek and Charlie Mavon, raised thousands of dollars for their classmate Hugh O'Donnell, who has epilepsy. They received a standing ovation when their story was told on stage.

Congresswoman Jan Schakowsky is interested in the scope of the mission. "CURE has done a great job in funding very important research to find not just a cure for epilepsy, but also for other neurological conditions."

Alderman Ed Burke says he has been to every CURE Annual Benefit since the inception 14 years ago. "I think Susan's vision in expanding research in epilepsy is now beginning to have significant results – public awareness and knowledge that comes with it. It raises awareness that it is a national health problem."

And although it's estimated that epilepsy costs the U.S. about $15.5 billion annually, some might consider that calling it a national health problem is an understatement, as it claims overseas lifestyles as well. The World Health Organization states that up to 94 percent of patients with epilepsy in developing countries do not receive appropriate treatment. Ninety-four percent!

Takayoshi-san Oshima, a benefit sponsor and entrepreneur who sells IT infrastructure through his company Allied Telesis, said that his involvement is good for business. "We're here to do some good for the world and it benefits us because we get to meet people involved in healthcare."

Dinner Chair Bill Daley highlighted what differentiates the CURE benefit from other charities. "Funds raised at this event overwhelmingly go to research. The issue with epilepsy is that there are so many forms. Most money that was spent before was to find out how to treat epilepsy. When Susan got involved, she wanted resources to be used towards finding a cure."

Funding research is a core mission of CURE, and the field is becoming more competitive, said Susan, in her general address to the attendees. "In our first year, in ‘98, we received just a handful of applications from scientists for funding. This year, we received 150, from brilliant scientists around the world, who are poised and ready to find solutions. This year, we' re investing $3.5 million in research---more than we've ever funded before."

Lauren is now 31-years-old. The picture of her father, she lives in Miserocordia, a Chicago residence for the developmentally disabled, and even has a boyfriend or two. Her epilepsy is now controlled. For more information, go to www.cureepilepsy.org.

Powered by WorldNow

25 FOX Drive
Dedham, MA 02026

Phone (781) 467-2525

Didn't find what you were looking for?
All content © Copyright 2000 - 2014 Fox Television Stations, Inc. and Worldnow. All Rights Reserved.
Privacy Policy | Terms of Service | Ad Choices