David And Susan Axelrod Fight For Epilepsy Cure

Most Americans know David Axelrod as a senior political adviser to President Obama. But last night, David and his wife Susan joined Katie Couric on CBS's 60 Minutes to discuss his other role -- as a concerned parent of a daughter with epilepsy.

Susan Axelrod described the discovery of her daughter's illness to Parade in February of this year. In early 1982, the Axelrods' seven-month-old daughter Lauren had a cold:

"I picked her up, and she went into a seizure--arms extended, eyes rolling back in her head. I realized she'd most likely been having seizures all night long. I phoned my mother and cried, 'This is normal, right? Babies do this?' She said, 'No, they don't.'"

With the continuing seizures and a potential cure not even a topic of discussion, Susan ultimately dropped out of her MBA program to take care of Lauren full time. Even as their family grew and David Axelrod left the Chicago Tribune for a political career, Susan's focus remained on her daughter's epilepsy and the struggle to find adequate treatment.

"At first we thought it would be a passing thing; we never realized these seizures would define her whole life," David Axelrod has said.

The Axelrods are far from alone.

Epilepsy impacts up to three million Americans of all ages; more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined. Federal and private dollars invested in epilepsy research pale in comparison to those spent on other diseases.

"Every day 500 people are diagnosed with epilepsy and doctors don't know what caused it for more than 300 of them," according to Susan Axelrod. In 1998, the Axelrods and other parents of epileptic children decided to do something to help the staggering number of Americans who live with this disease. They founded Citizens United for Researching Epilepsy, or CURE, which has since raised over $10 million to fund over 90 cutting edge research projects into cures for epilepsy.

The 60 Minutes episode also featured CURE's scientific adviser, Harvard researcher Dr. Frances Jensen, and Captain Pat Horan, who has struggled with epilepsy after a traumatic brain injury incurred in 2007 on the battlefield in Iraq.

Susan Axelrod hopes that the CBS segment, along with CURE's new Every Dollar Counts, Every Seizure Matters campaign, will bring new fervor to finding a cure for this disease. Axelrod discusses the new campaign and the 60 Minutes episode on her personal blog for CURE.

Because of their work with CURE, the Axelrods found Keppra, an anti-convulsant that was new in the early parts of this decade. It worked for Lauren, and she hasn't had a seizure in nine years. Though the drug doesn't work for everyone, Susan Axelrod is committed to continuing the research and finding an ultimate treatment or cure for epilepsy that works for everyone.

The Every Dollar Counts, Every Seizure Matters campaign hopes to raise $250,000 by the end of the year to fund a new research award. Meanwhile, friends and supporters of CURE are already organizing viewing parties for the Sunday segment.

You can make a donation to CURE directly via the widget below. Help us meet our current goal of $5,000 to find better treatments and a cure for epilepsy:

The CURE website offers many ways of working toward the eradication of epilepsy. Here's a list of several actions they encourage:

1. Learn More: Get the facts.
2. Host: Plan an event.
3. Share: Create your own CURE webpage.
4. Speak Out: Tell Congress we need a cure.
5. Pledge: In-kind help is critical.
6. In the News: Enlist local media.
7. At Work: Double your donation with matching donors.
8. Clinical Trials: Play an active role in medical research.
9. Join CURE: Be a part of their family.

To share a story about how epilepsy touched your life, hit the participate button. Enter your story, give it a title, upload a relevant image if you have one, and hit submit.

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Comments

[Cheryl T Rose]

10:46 AM on 11/02/2009

it always gives me more hope for the fight against epilepsy when i see it being talked about in the media.my daughter hayley jade rose has one of the rare forms of epilepsy we have tried every drug and the keto and MAD diets unfortunately they didnt give enough relief from seizures to continue on with most of them and the ones she does take dont help enough either EXCEPT for medical marijuana.hayley is only 16 and has had a mmar license here in canada for over a yr now but with out the cannabis she wouldnt be here today.yes she does take pharmaceuticals as well but they give no where the relief from seizures that the marijuana has shown to give her.she is alive today because we tried cannabis along with her other meds.never give up and try anything you can to calm the seizures!

[juliaschopick]

01:32 AM on 10/29/2009

As I watched "60 Minutes," I rejoiced that epilepsy, which doesn't usually get recognition, was given significant air time.

But, I was disappointed that, as Alison Rose Levy points out in the Huffington Post (“Hold the MSG: Food Triggers for Epilepsy and Other Neurological Illnesses”), it's a shame that “proactive, preventive health care strategies that might help reduce incidence of epileptic attacks were overlooked” on the show.

The Axelrods are aware of one diet, the Ketogenic Diet, which helps approximately 70% of the children with epilepsy who try it. Unfortunately, Lauren Axelrod was one of the 30% the diet didn't help. Yet, since this diet has an excellent track record, and has been used successfully since the 1920s at Johns Hopkins, it should be included in discussions of epilepsy treatments. The Axelrods didn’t mention it on "60 Minutes," or in a recent "Newsweek" story quoting them.

I am featuring the Ketogenic Diet and its champion, Jim Abrahams, in my upcoming book, “Four Lifesaving Medical Treatments That Could Change Healthcare.”

The Axelrods know about this diet: Susan Axelrod lists Jim Abrahams as an “honorary board member” of CURE. And, she included an article by him in CURE's Spring, '08 newsletter.

In our conversations, Mr. Abrahams praises Ms. Axelrod. Why, since she has this platform, doesn't she tell the world about this dietary treatment that has helped many children with epilepsy? I hope this was an oversight, and that she'll mention it in the future.

Julia Schopick
www.HonestMedicine.com

[mrpmom]

10:39 AM on 10/29/2009

The Axelrods did not mention the keto diet, nor did they mention any other specific treatment on 60 minutes, including the medicine that actually stopped Lauren's seizures! The diet is one of many options that works for some but not for all. It is not a miracle cure.

[hottingers]

11:07 PM on 10/25/2009

Being an epileptic for over 40 years(from early teens) I am happy to see epilepsy given news coverage. I believe one of the reasons that epilepsy is talked about as much as other diseases is the taboo that is still put on it. You learn as an epileptic to keep it to yourself, let no one know. If you do not you will lose jobs, you will lose friends. You are always worried about having a seizure in public. I'm not saying that all people are this way, but many are.There are many types of epilepsy(an incredible amount) and all are different. But for those of us that are pretty well controlled the thing that we want people to know is we are just like everyone else(actually better ha ha) and can do anything anyone else can do. I can now talk about it because of retirement( I once lost a very good job because I had a seizure, although they didn't use that as the reason). But as others have mentioned seizures are not the only problem of the disease. Side effects of the medication can be minor (memory loss, dificulty to come up with the word you want, weight gain, lethargy, etc) or deadly. I thank all of the posters with possitive comments and feel sorry for all with negative.

[superjules]

09:31 PM on 10/25/2009

I have had epilepsy since the birth of my daughter 20 years ago. I'm not sure what happened that day. Topamax is the latest drug I've been put on and so far it has worked really well for me. Living with the horrible side effects is something else entirely. Those of us who take it call it Stupemax because of the memory loss and the inability to recall and get out words when you need to. I've seen the movie Love, Actually at least 7 times and I don't recall a single thing about it. In fact, it's like that with most movies and books. I watch or read them and a week later, it's like it never happened at all! Every movie and book, no matter how many times I've seen/read them is a surprise! Isn't that great? Then there's the numbness in the feet and hands, as if they're asleep. Oh, and I can't drink soda anymore, because the medication changes your taste buds. That's ok, it's bad for you anyway. I'm sorry, I'm whining. At least I don't have seizures very often. Right? :)

[TheMediaRanger]

01:06 AM on 10/27/2009

I don't know how the severity and frequency of your episodes compare with mine, or how comfortable you are with your neurologist's competencies, but those side effects sound like more than you should have to deal with. Everyone tolerates the various anti-convulsants differently -- for me, Tegretol knocks the bejesus out of me. It's still effective, but I've needed to lower my dosages and supplement it with Depakote -- a trial & error process that took quite a while to get me on an even keel and mostly episode-free. The one side effect is a mild hand tremor from the Depakote, which I can easily live with. Good luck.

[superjules]

02:57 AM on 10/28/2009

Howdy Ranger, thanks for taking the time to respond. When I first got "sick" they started me on Tegretol. After years of being on that, I discovered by accident that one of the side effects (in rare instances) is you can stop making white blood cells. Lucky me! So I went on Depakote and it was ok, but I still had seizures. At least with .... um.. whatever it's called, I don't have seizures anymore. Also the Stupemax is really good at helping my migraines. I guess you have to take the good with the bad, right? Do you still have breakthrough seizures? Did you have seizures when you were a kid? Oh, and my neurologist barely speaks English and for some reason doesn't speak to me but addresses my husband as if I deaf. :)

[Clem2]

09:14 PM on 10/25/2009

My girlfriend's sister has it, but medication takes care of it. I guess she is lucky. Didn't realize medication didn't help most peole with this.

[Freenation]

08:31 PM on 10/25/2009

sadly there is no cure of epiliepsy atleast some types of them...

[katieandtom]

08:18 PM on 10/25/2009

as a repub, believe it or not, i am human. and this human has a heart for anyone suffering from epilepsy and their family.

[hoodtexas63]

07:44 PM on 10/25/2009

As a conservative, I don't always agree with Mr. Axelrod on many of the issues we face today; however, as a father, I realize that there are some things that transcend political differences. This is certainly one of them. My heart goes out to Mr. Axelrod and his family.

[psa613]

09:15 PM on 10/25/2009

I too am a conservative, and a parent. My heart and prayers go out to the Axelrod family.

[gregrocker]

05:19 PM on 10/25/2009

Lauren, the world your father helped save wishes you a life as beautiful as you.

[BambooHarvester]

07:28 PM on 10/25/2009

Seconded !
~

[changeself]

03:50 PM on 10/25/2009

i grew up reading tostoi's stories for children

where he writes "we are doing well not because we take a good care of ourselves but because someone else out there cares about us."

no wonder his wonderful stories never made it across the atlantic

to make the children of this country think and ask right questions.

self-serving is the highest virtue in this country.

[roshni]

06:20 PM on 10/25/2009

Not everywhere. I have met the kindest, most generous people during my last stint volunteering for Obama. I used to think so, but there are wonderful people out there. don't be jaded/

[southernbliss]

09:53 AM on 10/25/2009

My son has seizures. He was diagnosed at 7 years old. Seven years later he is on 1800 mg of carbatrol every day. The seizure meds are destroying his liver and will only be eligible or a VNS when his liver starts to fail. This is why we need health care reform. Because my son's condition is a birth defect (Agenesis Corpus Callosum), my insurance company will not pay. My son is eligible or disability benefits but they (SSI and medicaid) have determined I may too much to qualify. And believe me as a accounts clerk in Arkansas, I do not make very much. Without the VNS, the doctors have said that he will be subject to strokes, of which we have now had 3 minor ones and I am terrified some mornings when I have trouble waking him up, that he will not.

[Terry6202]

03:57 PM on 10/25/2009

Write all of this to your governor, state and local politicians and give them the tel. # of your SSI office. Demand that they call and dismantle this hurdle. I know it can be done from personal experience. Do it tomorrow.

[gonzie46]

06:26 PM on 10/25/2009

start giving him folic acid my daughter had to take that so that her liver would not go bad. Also I had trouble with SSI too...my husband made too much money. When he is about to turn 18 take him to the SS office and have him apply. My daughter had the VNS implant she went from having 3 siezures a day to 3 to 4 siezures a month it does help. Contact CURE maybe they can help with the cost of the VNS

[olivesforbreakfast]

09:51 AM on 10/25/2009

there is an amazing illustrated book about epilepsy which i would recommend to anyone who has it or knows someone who has it.

it was written by a man named David B. his brother had the illness.

i think anyone who reads it would agree that it's a special book. it evokes compassion and is a marvel on its own terms.

i have no connection to David B. or amazon.com. i offer this URL only because it might simply taking a quick look for some interested readers.

http://www.amazon.com/Epileptic-David-B/dp/0375714685/ref=sr_1_3?ie=UTF8&s=books&qid=1256478291&sr=1-3

[olivesforbreakfast]

09:48 AM on 10/25/2009

There is an amazing illustrated book about epilepsy which i would recommend to anyone interested in the subject or who knows someone with it.

it is by David B. who wrote about his experiences with an epileptic brother. to say i was deeply moved by reading it is to put it lightly.

i have no connection to this author. just someone who read it. i offer an amazon.com address simply because it is convenient for taking a look.

http://www.amazon.com/Epileptic-David-B/dp/0375714685/ref=sr_1_3?ie=UTF8&s=books&qid=1256478291&sr=1-3

[W i l l]

07:52 AM on 10/25/2009

Marijuana calms epilepsy...dramatically.

Why the Axelrods aren't in Obama's face daily with demands of conducting approved research with marijuana so that their daughter and millions of other Americans can legally have the peace and serenity of mind and body that they deserve, is beyond me.

I say again...marijuana calms epilepsy. The only apparent side effect suffered by the majority who've used marijuana for their tremors...utter relief.

[stepintothelight]

04:23 PM on 10/25/2009

Did you not hear about relaxing Federal supersedance? Tell me what methods you would employ?

[gonzie46]

06:29 PM on 10/25/2009

Marijuana is good for some people but not all my daughter took one hit of marijuana for her seizures and she almost OD. Now they got her listed as an addict

[Ryan Scott]

02:20 PM on 10/26/2009

What?

There's no such thing as ODing on marijuana and its not physically addictive.

[James Sutandyo]

01:21 AM on 10/27/2009

false...

[RevRayGreen]

06:01 AM on 10/25/2009

my wife has epilepsy and her use of marijuana keeps the siezures to an annual minimum.

[Minimax]

06:57 PM on 10/25/2009

Marijuana is also good for the spouse of an epileptic.