Saturday, October 26, 2013

Realm of Caring News Conference



So, we sat with Sophie and hundreds of other people in the above auditorium, listening raptly to Josh Stanley, a few of his brothers (there are 6 of them and 11 kids in total!), Paige Figi (the mother of Charlotte, of Charlotte's Web fame), and Ray Mirzabegian who brought us all together, as well as Jason David who you can read about here. The auditorium was some old-timey venue, and before the meeting started, I felt as if I were on the set of a Fellini movie. Honestly, sometimes my life feels like a Fellini movie on the good days -- and perhaps an Ingmar Bergman on the bad. The news conference was wild and amazing and emotional. I joked to a friend that those Stanley brothers are like Jesus and the Apostles, and I don't mean that in any religious sense. I mean they're on the edge -- perhaps of a sort of revolution -- and they're gorgeous.

I'm glad that I didn't end up wearing the Teletubby costume, because it's all going to happen. We're going to get Charlotte's Web here in California, very, very soon, and until then I have a small bottle of tincture, given to me by someone very instrumental in this whole revolution, and we're going to try it. Maybe even tomorrow.

We talked about facts today; we heard stories (lots of stories from families with kids with epilepsy who began seizing after vaccinations, who began seizing out of nowhere, who were seizing in utero, who have been diagnosed with syndromes and traumatic brain injuries and from people with multiple sclerosis and arthritis and cancer, etc.). We learned about the scientific evidence that cannabidiol has neuroprotective qualities, that it's being used effectively for patients with PTSD, with depression and with all number of neurological disorders and cancer. It went on for hours and hours and it was insane and it was completely and utterly sane.

I will keep you posted. Email me if you absolutely need to know every detail or if you have specific questions. I will try to answer them. If you live in one of the more backward states (ahem -- Texas, above all and most of the southern states), have no fear. These people are working toward making this medicine available to every child that needs it. There are studies being conducted or begun in many of the major epilepsy centers in the country. It will take advocacy and education -- not activism -- because of the draconian federal laws in place that make marijuana equal to heroin and methamphetamine as a strictly controlled narcotic.

I am, of course, excited to see whether this will help Sophie in particular but I'm also certain, now, that it's helping a whole lot of kids like her, for real. It is at once inspiring and utterly draining which I can imagine is mainly because it comes, for us, so very late.

We shall see.


23 comments:

  1. one of my favorite sayings "my life is a Fellini movie"

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  2. It is exciting to know it will be in another state soon, to help more of the population who need it.

    I know you'll let us know if it works for Sophie, but I'm sending extra good thoughts your way that it works, and works immediately.

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  3. Sending prayers for the absolute best possible outcome...

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  4. How exciting...hoping to hear good news!

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  5. I am so hopeful that this helps!!

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  6. Hoping for the best for all who need this.

    Best,
    Bonnie

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  7. Best wishes for a great success!

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  8. Oh, so many thousands of children and family that could be helped by this. So much suffering that could be ended. It leaves me breathless. I am praying so hard for Sophie!

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  9. So hopeful today for Sophie and everyone in need. Fingers crossed. Suz Anon

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  10. There is no "late" in a timeless universe. I am so hopeful for Sophie, and so grateful for your efforts to educate!

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  11. You have hope which is a wonderful thing. I have my fingers crossed and sending a prayer. Take care woman.

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  12. Wow, just wow. Also holding my breath.

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  13. This is so very exciting. I'm thrilled that it is coming - I know that it is "late" for you, as T-Cell therapy is for us, but it is still so hopeful and exciting to see SOMEthing new/different that has real promise for so many applications. I am sitting here holding hope, feeling joy for you, Sophie - and all who need this!

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  14. Sometimes I wish I prayed. Instead, I join you in great hope.

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  15. I pray and hope and hope and pray, that everything works out. I hope Sophie responds well to it , I hope it comes sooner than latter .

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  16. Here in Canada you can get a licence to use (or grow) marijuana for medically required purposes. I think a doctor's letter is really all that is required. If you don't have that licence, then it's still illegal here to possess it or grow it (or sell it, for that matter). Is it similar in California now? Forgive me, you may have mentioned this before, I am just curious. To me it just seems like the right thing to do in the face of laws that are often just plain stupid.

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    1. The laws are quite a bit more liberal here in California, Jacqueline, than they are in Canada, but they vary from state to state, and overarching all of it are federal laws which are quite draconian.

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