Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=163435
Story Retrieval Date: 1/26/2015 8:24:33 AM CST
Jordan K. Turgeon/MEDILL
Jeannie Pritchard knows what an oncoming seizure feels like. The 26-year-old’s heart drops into her stomach, and she is immobilized by fear. She pores through pages of magazines and books, searching for an explanation to a disease that can strike without warning. Two months without a seizure is an accomplishment worthy of celebration.
But Jeannie doesn’t suffer from epilepsy.
Her husband, Zak, does.
“He feels bad, and he apologizes to me after he has a seizure,” Pritchard said. Zak was diagnosed with epilepsy a year before they wed.
Jeannie understands that epilepsy is unpredictable – a sudden storm of abnormal electrical impulses in the brain that trigger a seizure.
“You can’t do anything to prevent it. You can’t do anything to stop it,” she said.
Both Jeannie and Zak joined approximately 800 guests, including keynote speaker Katie Couric of "CBS Evening News," at Chicago’s Field Museum Friday evening. Families gathered to celebrate with Citizens United for Research in Epilepsy, a non-profit organization dedicated to finding a cure for a disease that affects 50 million people worldwide.
“I know that you all really are making a difference,” Couric said. “I know how committed you all are to your cause, and the blood, sweat and many tears that have created this organization.”
Until recently, epilepsy research received less attention and federal funding than most other major neurological disorders. Yet, according to CURE, the disease affects more Americans than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined.
Despite a landmark year for epilepsy awareness, an estimated 50,000 Americans lost their lives to epilepsy-related causes in 2009 – more than the number of people who died from breast cancer.
But 2009 marked a year of escalated media coverage and unprecedented fundraising for epilepsy awareness and research.
Starting with a February 2009 feature in Parade magazine, to a spread in Newsweek two months later, and culminating with a segment on “60 Minutes” with Couric last October, public awareness about epilepsy is increasing dramatically, and so is the toll it takes on the 200,000 Americans diagnosed each year.
12 years, 3 mothers, 1 CURE
CURE came from humble beginnings: 3 mothers – tired, frustrated and dreaming of a future without epilepsy – sitting around a kitchen table.
Since then, the organization has grown, both in size and prominence, raising more than $10 million to date for epilepsy research.
One of those moms was Susan Axelrod, CURE’s co-founder and chair. She had never heard of epilepsy before her daughter, Lauren, was diagnosed with the disease when she was seven months old.
Over the years, Lauren Axelrod, 28, who now lives in the Misericordia home for the developmentally disabled in Chicago, would eventually try 20 different drugs and a five-hour neurosurgical procedure, among countless other hospitalizations, in an effort to stem the seizures.
“If I told you about the day our lives changed forever, when I found her lying blue and limp in her crib, after what I quickly learned was a night filled with seizures, that would only be the beginning,” said Susan Axelrod in a statement on CURE’s website.
Since its inception 12 years ago, CURE’s focus has been on funding innovative epilepsy research initiatives –100 to date – some in partnership with the U.S. Department of Defense.
Investigators around the country use the awarded funds to explore new areas of research in an effort to derive new treatments for the 40 percent of epilepsy patients who don’t respond to therapies currently available.
“We have a lot of work ahead,” Susan Axelrod said. “We haven’t yet made a dent in that statistic. Young brains continue to be ravaged.”
According to the Epilepsy Foundation, 70 percent of epilepsy cases have no known cause – and even when the cause is clear, the disease is still unpredictable.
Captain Pat Horan, who was featured on the original “60 Minutes” segment, was diagnosed with post-traumatic epilepsy following a brain injury he suffered while serving with the Arrowhead brigade in Iraq.
Horan was to be a guest at Friday’s event, but an email from his wife, read during the program, explained their absence: a grand mal seizure – the type commonly associated with epilepsy – left Horan unable to make the trip.
Taking center stage
An estimated 14 million viewers watched the original “60 Minutes” airing featuring Susan, Lauren and Susan’s husband, David Axelrod, White House senior adviser. For her role in promoting epilepsy awareness, CBS’ Couric was honored with the 2010 CURE Excellence in Journalism Award at Friday’s benefit.
Couric praised CURE for its work in promoting epilepsy research and fundraising. Just recently, CURE announced a line-up of new research grants for 2010, totaling more than $1 million.
“This is a disease that has been around since biblical times,” Couric said. “It’s maddening to me and needless to say, to all of you, that more attention hasn’t been paid – but of course, we’re starting to change that.”
Like many attending guests, Couric has experienced firsthand the devastating effect a disease can have on a family. Her husband, Jay Monahan, died of colon cancer in 1998 when their children were still young.
Millions watched as Couric turned her grief into action when she launched the National Colorectal Cancer Research Alliance in 2000, and again when she went a step further and aired footage of her own colonoscopy on national television to encourage others to get tested.
“I know what it’s like to try and bring attention to a disease that no one really wants to talk about because it makes them uncomfortable,” Couric said.
Friday’s benefit showed promise for the year ahead while honoring those who fight epilepsy daily – including the many parents and family members who are forced to watch their loved ones battle the merciless disease.
Jeannie Pritchard knows this helpless feeling all too well.
“I worry about him every day,” said Pritchard of Zak’s epilepsy. “If he calls me from work…I automatically think he’s had a seizure.”
Susan Axelrod recognized the parents of children with epilepsy at Friday’s benefit, calling them on stage and praising them for their unwavering strength and perseverance.
“Your role in this effort is paramount,” she said. “In such tough economic times, we so value your support.”
At the end of Friday’s program, Susan Axelrod announced a new fundraising initiative called the CURE Mother’s & Father’s Day Campaign. The goal is to raise $300,000 by June 30 to fund three “Taking Flight Awards” – research projects designed by a new generation of young, talented scientists.
But Susan Axelrod said there is still much work to be done.
“We can’t rest now,” Axelrod said. “We need you more than ever to help us build on this momentum, to continue to help us as you are doing tonight, to fund the research that will one day put an end to this devastating disease."