Thursday, July 3, 2014

Medical Marijuana, CBD Update, Realm of Caring, Weedmaps TV and Vanity

Last month, right near the 19th anniversary of Sophie's diagnosis of infantile spasms, I had the great opportunity to tell our story to a crowd of folks at the Realm of Caring fundraiser. Here's a video which features some clips from my own speech but also from some of the other families, as well as the phenomenal Dr. Bonnie Goldstein who is working with many of these children with refractory epilepsy, as well as other illnesses. She explains the whole shebang in the clearest, most professional way. Please listen to the whole thing -- it will be thirteen minutes of your day well spent.




The video was made by Weedmaps TV -- I know, I know. The name. Get over your hang-ups, folks, and embrace it. If you hold-outs do that, I'll get over my hang-ups about being photographed at angles I'd prefer to never see. I took the first step by even posting this thing. You take the next. My vanity for your ignorance.

As for our Sophalofa, she is struggling a bit as we adjust both the CBD, THCa and her regular anti-epileptic medications. Overall, she's excellent. Breakthrough seizures are perhaps more difficult to deal with as we've now seen so many seizure free days! As Henry said the other day when I lamented how hard it is: Mom! Think about how many seizures Sophie had every single day for so long! We haven't picked her up off the kitchen floor in months!

13 comments:

  1. The mouths of babes. Your Henry reminds me of my daughter. So much.

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  2. I embrace it. I embrace it with all of my heart and I embrace you and your family which has been given hope as Sophie responds so beautifully to CBD. What a great, great clip!

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  5. That was so inspiring. You are beautiful and poised and honest. And, unfortunately at the mercy of a camera man who should have his license to shoot revoked. Keep speaking out and sharing your story. It will get easier and feel free to reposition the camera man to suit your best side.

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  6. Just watched the video. It's a potent piece if testimony from all of you. You are changing medical history along with saving lives. Brilliant. Inspiring. I too feel honored to know you and witness Sophie's and your family's journey.

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  7. I am a firm believer in the idea that suffering should be alleviated whenever possible. I can't believe that this is not readily available. It's immoral.

    Bah on the camera angles. You rock

    xo







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  8. Go Weed! It helps my Katie relax. It's nice to see her laugh again.

    Now we just have to convince the stupid bloody politicians.

    It's so good to hear the Sophie is no longer on the kitchen floor. It's such a wonderful thing.

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  9. Brought me to tears. I am so happy for Sophie. I hope all the children who need it can get access to it soon!

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  10. I second Michelle's comment above. Also, I think Weedmaps TV is a perfectly respectable name. I'm all for it. :)

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  11. Great video Elizabeth. Thanks for posting. I'm embracing (and crying) over here watching this. Went to a Cannibas market in east LA this morning with my cousin who is suffering with rheumatoid arthritis. May Sophie continue to improve.
    P.S.You glow at any angle.
    Happy fourth!

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  12. This made me weep - so many families and so many years, saved by the laugh line in a surfer movie. The world is an amazing place sometimes.

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