Friday, June 11, 2010

Epilepsy Foundation of Greater Los Angeles


I'm on the board of the Epilepsy Foundation of Greater Los Angeles, and on Wednesday night we had the annual Care and Cure Dinner. Over 700 people gathered for dinner and presentations at the Beverly Regent Wilshire Hotel. It was a very grand affair, and while business casual, the attendees included lots of Hollywood power elite -- something that I could actually care less about but when it's for a cause so dear to my heart, I'm more inclined to be interested. The event was very expensive, too expensive for most of my people, but three of my dearest and most generous friends came with me (The Husband had to work). When we walked into the ballroom, this is what we saw:



This is where we hung out


I don't know the amount, but I imagine a lot of money was raised, most of which will go toward funding two Fellows in the department of pediatric neurology at UCLA. There is a dearth of pediatric epileptologists in the country -- so few that most children must wait at least six months to get an appointment with one. Our organization is hoping to change that, and this successful dinner was a step in that direction. One of the Fellows who was funded last year spoke at the dinner and he said something that I have NEVER heard a neurologist say before. I think I'll end on it because it was that powerful:

This disease is not about life and death. It's about life and a fate worse than death.

Hallelujah and amen to that.

16 comments:

  1. Wow! That banner is so dramatic and gorgeous. What a wonderful picture of Sophie. Did a professional photographer take that? There's something about it that captures her soul. Wow.

    I don't know how people in Chicago see epileptologists. When I tried finding one for my son through the Children's hospital here, I was told none of them see patients on an outpatient basis! They only see kids who are hospitalized, otherwise we need to see a neurologist -- and those aren't easy appointments to book, either!

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  2. Lovely vision of Sophie, and the neurologist's remark makes me hope even harder that the new round of IVIG--may it happen soon-- will give her relief.

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  3. What a face! I just adore that photo because it is such a reflection of who she is inside, the Sophie that I know someday will come out and stop swimming like a mermaid to live like the beautiful human being she is.

    Sending love and hopeful thoughts as always.

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  4. That's beautiful. Thanks for posting.

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  5. endswith8741 -- I took that photo of Sophie a summer or so ago, I'm proud to say. It's one of her classic penetrating looks that is very difficult to photograph, but there it is!

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  6. Sometimes things are right. And it feels so good.

    Loved seeing you-all gussied up and hanging with Sophie.

    And I loved the truth of the end.

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  7. Sophie is so beautiful! That photo is just stunning.

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  8. Sophie's beautiful face is just perfect for the banner.

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  9. i am so heart struck with love. sophie has a way of looking right into ones soul.

    beautiful. when i look into her...i see so much of you.

    i am so honored you shared this.

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  10. she couldn't be more beautiful.

    xo

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  11. Beautiful, beautiful, Sophie. So glad the dinner went well.

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  12. Tears. Thank God for such a doctor, for his understanding and compassion and respect for what this disease does. And thank God for your group, and the generosity of all those attending and donating.

    I love the photo banner - did you know they were going to feature Sophie's photo so prominently? I hope you got to take it home...or maybe not everyone is like me (I'm a photo freak) - maybe they need it for another function? In any case, she's a beautiful model, and you and your friends look beautiful, too.

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  13. The quote from the neurologist made me wanna cry. But the picture of Sophie is ethereal.

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  14. It's wonderful that so many people turned up, and that money and awareness was raised to improve that fate.

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  15. We are more than likely going to be getting a referral to UCLA Epilepsy center soon. Our neurologist is up against a wall with my daughter, he thinks we need someone more specifically treating epilepsy. We have heard that Dr. Shields is the best. I worry reading this post though, that we will have to wait forever to get in! Is it really that long for a new patient? My Peanut may not have that long ... her seizures are getting worse and worse. :(

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  16. incredible.
    all of it.

    daughter and mother , ravishing.

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