Monday, October 22, 2012

Help Wanted and The Epilepsy Walk



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).

This Sunday, October 28th, is the Epilepsy Foundation of Greater Los Angeles' End Epilepsy Walk, and Team Sophie will be at the Rose Bowl in beautiful Pasadena, walking doggedly. I know these walks and ribbons and colored days can be tiresome -- I myself have taken a couple years off in a sort of anti-non-profit foundation sabbatical, but I'm back, as are Henry, Oliver, Sophie and The Husband. Sophie had a seizure last night, again, at the dinner table that would scare the beejesus out of any normal family (as Oliver put it). I desperately wish that they'd stop, and while I know it might not happen soon enough, with enough support, enough money and enough doggedness, some kind of impact against this scourge will be made.  I'm making a last ditch effort to sign up more members and get more donations, so if you'd like to support us, please go to the Team Sophie page! And thank you, thank you, thank you to all of those who have already donated or who are actually walking with us! I so appreciate it.

6 comments:

  1. Wish I could walk with you! But I'll be there in spirit and have donated to the cause. I had no idea the disparity in funding levels for epilepsy. What's up with THAT?

    Good luck meeting your fundraising goals -- you are almost there!

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  2. Somehow I don't think that god could fulfill the duties and job description of the scientist/humanitarian...and she can do a lot of stuff!

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  3. i will be thinking of you on sunday, all of you walking with stubborn hope. it's the best kind there is. love love love.

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  4. Shared this one on Facebook. Those facts are astonishing. Truly.

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  5. Love you, girl. You are a warrior.

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  6. You are an inspiration to our community. My family and I support team Sophie!

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