From Claire Johnson: Dear friends and family, I realize many of you do not live in WI, but I thought you would be interested in hearing about this and might keep a close eye out for movements happening in your own state. (If you know about why we want medical cannabis for Melanie, you may skip down to the paragraph marked with **) In states all over the US, there are movements towards legalization of medical marijuana- or cannabis. Many of these movements and bills being authored, sponsored and passed are being spear-headed and fueled by parents of kids with Dravet Syndrome, just like our little Melanie. dravetfoundation.org/ MelanieRoseBlooms.blogspot The inspirational family and the poster child for this movement, particularly in the world of Dravet and severe seizure disorders, is the Figi family in CO. Namely, 6-y-o Charlotte, who has a cannabis plant named after her, Charlottes Web. If you dont know her story: see this CNN documentary, called WEED https://youtube/watch?v=Qw4LMXTb26o, or watch this fantastic 18-minute synopsis of the story and the case for cannabis for treating seizures: https://youtube/watch?v=ciQ4ErmhO7g (Josh Stanley TED talk in Boulder, CO). If you check out either of those videos, you will see why this option is so appealing and exciting for families like us with children like Melanie. Many of you know the basic gist, but for those who dont, know that Melanie would receive this medicine in an oil form, produced from a plant like Charlottes Web in another state, and it would be mailed to our prescribing doctor in WI and dispensed to us from their office. This plant is bred to be extremely high in CBD, the medicinal element, and extremely low in THC, the psychotropic element. These kids do not get even a remote high. She would take it from a syringe, like her other liquid meds. There is tremendous potential for efficacy here, and a promising possibility of drastically tapering or even eliminating the dangerous meds shes on now. **So, youre wondering what I was talking about, getting this oil from a WI doctor... first youve heard of this? Well, THIS is the point of this email, and the reason it is targeted to our WI friends. There is a bill in the state legislature right now, which was passed strongly through committee, with bi-partisan support, which would legalize the use of CBD oil for the treatment of seizures in WI! This is not the blanket medical marijuana bill: this is very specific and has much more traction and support. I spoke with a mom who is helping to fuel this action, Sally Schaeffer. She lives in Burlington, and her daughter doesnt have Dravet, but a chromosome disorder which causes 80% of her sleep to be plagued by seizures. They were featured in a story on Channel 4 News recently, which can be found here: lovinglydia/ She told me she knows of at least two state legislators who have changed their minds on this issue BECAUSE OF ALL THE LETTERS they have recieved from constituents. There is a time crunch now, as the legilative session ends very soon. So PLEASE help us out, and make some noise! Especially in northern WI- we need more voices up there! Share this with friends and neighbors!! Below is a form letter which you are more than welcome to use and share with anyone and everyone you can think of in the state. Also, here is a link to find your state legislators: legis.wisconsin.gov/pages/waml.aspx Please write your representative, senator and Gov. Walker. This is of utmost importance to Melanie and many other suffering kids in WI! Thank you, Claire
Posted on: Thu, 06 Mar 2014 05:46:19 +0000
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