Tuesday, October 13, 2009

A Help Wanted Ad






Looking for a scientist/humanitarian to find the reasons and cure for epilepsy, particularly pediatric cases. Applicant must know the brain inside and out and have witnessed the daily life of a child with uncontrolled epilepsy. Interpersonal skills a must as is a total disdain for insurance companies and dubious appreciation of pharmaceuticals. Assumption that pharmaceutical discoveries will be considered successful ONLY if side effects are minimal to nonexistent as defined by parents of child or child him or herself. Cure must be complete and total; 30% or 1/3 efficacy rate is not acceptable. Applicant must have ability to outwit the brain.


Sobering Statistics:


1. Epilepsy in America is as common as breast cancer and takes as many lives.
2. One in 10 people will suffer a seizure in their lifetimes.
3. The mortality rate for people with epilepsy is 2 to 3 times HIGHER than that of the general population.
4. The risk of sudden death for people with epilepsy is 24 times higher than that of the general population.
5. There are 200,000 new cases each year, and a total of more than 3 million Americans are affected by it.
6. This number is MORE than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease COMBINED.
7. Public and private funding for research lags far behind other neurological afflictions, at $35 per patient. Compare this with $129 for Alzheimer's and $280 for multiple sclerosis).

I don't have the time or inclination, here, to discuss why the above facts are true, why epilepsy has such a stigma and why most people are completely unaware that 1/3 of those with epilepsy have no control.

But I wanted to tell you that I recently gave a presentation with two other women from the Epilepsy Foundation of Greater Los Angeles to a group called Women in Film. We were in the running for a PSA (Public Service Announcement) that this fine group of women in film does every year for four organisations. They do the PSA for free. The director of the EFGLA gave a very short presentation on what the foundation does and what epilepsy is. She also went over the statistics I listed above. The other board member told the story of her now eighteen year old son who developed epilepsy after brain tumor surgery. I told Sophie's story and wove in the handicapped placard story that I posted on this blog (HERE) to demonstrate the general ignorance of how devastating this disease can be.

To make a somewhat long story short, Women and Film CHOSE US as one of the four organisations! They will be working with us over the next year to make a public service announcement (film, radio, ad, etc.), so stay tuned! Definitely a small step, but one that moves us forward nonetheless!

I also just read this op-ed piece by David Brooks which, while fascinating and certainly worthy of the op-ed page of the New York Times was the impetus for today's post. Because what I thought when I read this is WTF?  I think these three words often when I hear about incredible research being done, inventions being made, patents pending, Nobel prizes awarded, satellites orbiting, ipod advancements, missiles exploding on the moon, biological warfare, nuclear fusion or fission or whatever. And at risk of being like those people who go to art museums and say, "I could do that!" I wonder WTF? 

WTF?

Can't someone, somewhere, help figure out why my daughter's brain seizes and what to do about it? (and not just my daughter, I might add...)

7 comments:

  1. that's so great that they chose your cause, elizabeth. i pray that it brings some sort of awareness, and (at least) some relief in feeling that you (all) are being heard.

    exploding missiles to the moon. yes. i have been wondering about that one as well, and why i seem to be the sole human who has heard of it.

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  2. that is so cool that they picked you guys - you have a compelling case for being picked - I had no idea it was so common and so commonly neglected as well.

    And the moon .... when I first heard about the plan this was my thought, "Our great grandchildren are going to be shocked, appalled, ashamed, flabergasted and confused at the way we treated (destroyed) the earth AND the moon! Argh!"

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  3. I want to find anyone, settle for a voodoo priest/priestess that would make things go back to sane, as let's get our priorities straight for instance.

    We have money for war? Just a minute let's check the money for research. Oops, sorry no war this time. We have money for new airplanes for the military? sorry since there is no war let's use that money for research. No NASA, we don't have any money to go out there for the present. We have already polluted the environment here and it is going to take a long time to clean it. Once we put our house in order we can consider, after lessons learned, to go up again.

    When would this happen? when hell freezes over unless we really take to heart that we need to do this and get vocal and I mean as vocal as we were in the sixties about it. Of course then lobbyists weren't so in your face as they are now...

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  4. CONGRATULATIONS! That's awesome - you will raise awareness and bring hope and help to lots of people!
    We just learned from your facts, reading them now...thank you for posting them. Maybe you could put them on your sidebar?

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  5. Great news about the PSA! Looking forward to seeing/hearing more about that.

    AND I agree, WTF. WTF.

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  6. A friend of mine recently and without any warning or seeming cause, started having grand mal seizures. Fifty-something years old. "Epilepsy," they said and gave him medication.
    What?
    Why? How? And your daughter and all the children and all the lives affected by this misfiring of the brain and no one even talks about it and I am so glad your PSA will get made.
    I agree with Allegra (I always do) on the no-we-can't-have-a-war-because-we-can't-spare-the-money deal. Humans- why are we still so insane?
    Every time I hear something about that exploding missiles on the moon project I think my brain shuts down. "This can't be true," I think and then go on to the next news item.
    Maybe we should all be paying better attention.

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  7. WTF, indeed. If those big discoveries had been phrased as a multiple choice test, I bet pretty much everyone could ace it. No earth shattering discoveries there.

    CONGRATS on the PSA. Education is everything. Maybe some of those young scientists will see it.

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