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phylis...
phylis...

Katie Couric Reports On Epilepsy: A Fight For The Cure

(CBS) "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."

http://www.cbsnews.com/stories/2009/...n5414456.shtml __________________
www.epilepsytalk.com

By phylis... at Fri, 10/23/2009 - 1:52pm | 214 views | 9 comments

Recent Comments on this Discussion

Where can I find a Fight for the cure t shirt?

 

auntje...

"Epilepsy is like terrorism of the brain.  You don't know when it's going to strike, where you're going to be."

Was this put on t-shirts?  If so, where can they be purchased??

lwreath 

lwreath

The Children's Hospital Boston is posting a multi-part series of epilepsy-related articles on its pediatric health blog, Thrive - http://childrenshospitalblog.org/
The series will touch upon a wide range of epilepsy-related topics - from the epilepsy research to a video of a 15-year-old girl, her friends and family giving us their first-hand experiences on the challenges of coping with epilepsy on a daily basis.

Here is the link to our first post, featuring Children's Dr. Frances Jensen, MD, who appeared in a piece on 60 Minutes with Katie Couric, talking about the prevalence of epilepsy and the importance of funding research into its cure. Dr. Jensen also blogs about how epilepsy is often overlooked as a public health problem, limiting the scope for research.

http://childrenshospitalblog.org/frances-jensen-on-60-minute...

Childr...

Why that is terrific information!  I'll send it on to my local epilepsy foundation chapter!  Thanks LOTS! 

Phylis Feiner Johnson

www.epilepsytalk.com

phylis...

"Epilepsy is like terrorism of the brain. You don't know when it's going to strike, where you're going to be"

I want this on a t-shirt.

nix5149

Would you seriously buy a shirt with that on it?

I'm seriously asking because I know how we could do it through our Facebook cause and support this organization.

:o) Karen
epilepsy.com webmaster

kdredske

 I like the t-shirt idea A LOT!!!!

 

Phylis Feiner Johnson www.epilepsytalk.com

phylis...

   I like the T-Shirt idea too !!! That is so well put for many situations I've been in . . . well describing these situations !!!  If they are going to talk about Neuropace , I'm looking to have one . . . maybe even two of them! I just started Vimpat two weeks ago , if that's the new medication they will be talking about. My seizures are focalized when they start in either temporal lobe , so my last Video EEG described it as. Anything would be better than all medications that I'm on right now. I've been on over 23 medications, like Lauren Axlerod has and have had Invasive depth electrodes to study my brain. A Right Temporal lobectomy was also performed on me as well, this was done 2005 and I still have seizures. Just running out salutions to solve my problems too, I feel awful for you Lauren . . .this illness can be tough.

Oh...Dr. Professor Morrell if you see this ,I've watched your 11 minute interview with Joyce Cramer sooo many times.  You make Neuropace seem so effective and simple to have done. 

   A patient just losing his patience... in ways,

   Johnny

 

 

 

johnny

wow can not wait to see this....and that new device they mentioned is the one that they have in my brain!

embo830

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