Susan and David Axelrod's oldest daughter Lauren had tried 23 different medications and an unsuccessful brain surgery to control her epilepsy by the time she was 18.
When doctors could not stop her dangerous and devastating seizures, the Axelrods realized that they would have to do something themselves to help Lauren. Today, they are fighting for a cure for epilepsy by raising awareness and funding for innovative research.
Susan and David, President Obama's senior advisor, will appear in a Katie Couric 60 Minutes report on epilepsy to be broadcast this Sunday, Oct. 25, at 7 p.m. ET/PT.
"Why can't they stop a seizure? I mean, this is a disease that's been known since Biblical times. The research, and the ability to treat and control is so primitive," says Susan. David describes what it is like to live with the constant threat of seizures. "Epilepsy is like terrorism of the brain. You don't know when it's going to strike, where you're going to be," he tells Couric.
Epilepsy affects nearly three million Americans, more than cerebral palsy, Parkinson's and multiple sclerosis combined. What's more, the disease strikes and kills about as many in the U.S. each year as breast cancer, but gets five times less federal funding for research than breast cancer receives.
In addition, there is a new population at increased risk of developing epilepsy: veterans of the wars in Iraq and Afghanistan who have suffered serious traumatic brain injury.
Eleven years ago, Susan Axelrod helped found CURE, a non-profit organization dedicated to raising awareness for epilepsy and generating funds for research into new treatments and a greater understanding that could one day lead to a cure. One of the scientists whose work is partly funded by CURE is Dr. Frances Jensen at Children’s Hospital in Boston.
Asked by Couric if she is maddened by the lack of attention paid to epilepsy, Jensen replies "Yes. People don't realize that it's happening to two in 100 people, and even more than that, in five or six out of every 100 children."
There is some progress being made. A new device implanted in patients' brains has reduced seizures in some patients in an ongoing clinical trial.
And Lauren Axelrod, now 28, finally found a drug that made a difference for her, controlling her seizures and improving her life. "There was a time when we have given our right arm for just a week of good days," says David. "And now, she has them consistently. So, you know, that's a big victory."
Saturday, October 24, 2009
"60 Minutes" Oct. 25 focuses on lack of research attention toward epilepsy
From CBS News: