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Exciting News for Epilepsy and How You Can Help

Note:  This post is especially timely for any of my readers who happen to live in Utah–make sure to read to the bottom.  However, I hope everyone takes a minute to educate themselves on this important topic as it could be something that lawmakers in your area will have the chance to vote on as well.

A while ago I read an article on CNN that talked about a new treatment for children with severe epilepsy.  I was really touched by the article especially since I’ve spotlighted a couple kiddo’s with severe epilepsy.  Until these spotlights I never understood just how debilitating certain kids of epilepsy can be.  You can read those spotlights here and here (coincidentally both featuring adorable little boys named Cole.)  What was so great about this article was how a little girl went from having hundreds of seizures a week to 2-3 seizures a month.  The results of her treatment were immediate and drastic.  When children have severe epilepsy it affects almost every aspect of their lives, including cognitive and developmental delays.  I urge you to read the article here.

The medicine is cannabdiol, or CBD. It’s extracted from an extremely high CBD, low THC strain of cannabis nicknamed “Charlotte’s Web” (named after a girl in the article.)  It is taken orally as an oil, and has virtually no THC which means it cannot make you high. It’s a treatment, not a cure.

So when my friend posted about a mother in Utah who is part of a group of epilepsy moms trying to pass a bill in Utah that will allow their children to be treated with this medication I wanted to help spread the word.  The bill is narrow; it is not an initiative for medical marijuana; it includes ONLY the high CBD oil for use in epilepsy. The medication would be used under the supervision of the neurologists treating the children (the neurologists support this legislation.) There’s been a lot of support from legislators on both sides of the aisle. The sponsor of the bill is a well-respected conservative Republican.

So here’s what’s next:

Public Information Meeting
Tues, Sept. 10th 6:00pm – 8:00pm
Utah Valley University Sorenson Student Center
Room 206a
800 West University Pkwy

If you’re interested in knowing more about legislation, “Hope for Children with Epilepsy,” interested in helping get the word out, or want to talk to other moms and families who are dealing with epilepsy and what this bill would mean to them, this is the meeting for you. Attending will mean that you’ll be able to write your legislators in support when the time comes.
If you have a few mninutes check out the video below…basically a summary of the CNN article above also featuring another adorable kiddo as well.
It’s all about educating ourselves friends!  If you happen to be in Utah please do what you can to support this important cause!  As a sidenote, I’d love to hear from any of my epilepsy moms out there–thoughts feelings about this treatment? 

 

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