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...)