November 12, 2013 was unlike any other day. Yes, it is a sequence of numbers that will only happen once-in-a-lifetime (11/12/13). Yes, it was arguably one of the most pleasant November days in a while. But as a group of parents proceeded past Washington Square in Salt Lake City, a brisk breeze arose and began blowing golden yellow and orange leaves off the aged trees.
The idea came to mind, this is a day of change, and as a number of leaves left their branches the tree became more bare, a chill ran down my spine as the meaning behind the change of the seasons, in this circumstance, sunk in. I looked up at the trees and could observe the most basic aspect of the tree - as it became unhidden from its foliage. Again, another metaphor came to mind, as what was being proposed by these parents and professionals at the meeting was a topic that needed to become unhidden, as the tree was becoming.
But before I discuss too much talk of change, let me start at the beginning of the events from yesterday.
The Lunch Meeting.
The same group of parents and professionals met for lunch at Cannella's, and over scrumptious Italian food, two of the four the leading ladies, Annette Maughan and Jennifer May of Hope 4 Children with Epilepsy (H4CE) addressed the group. They also invited several of the esteemed guests to stand and/or speak to the group, at large.
Representative Froer, R-Huntsville, was the first to speak. The highpoint of his address was the excitement he had about the potential bill, if needed, for Alepsia, as well as the passion that he shows for supporting the children affected by severe seizure syndromes (commonly referred to as epilepsy, in general), such as Dravet Syndrome, Doose Syndrome, and Lennox-Gastaux Syndrome (LGS). He not only supports the parents of these children, but he recognizes the possibilities of treating other citizens of Utah who are affected by other diseases and disorders completely unrelated to Epilepsy, such as Cancer, Diabetes, Fibromyalgia, and many more.
Individuals such as the other two leading ladies, April Sintz and Emilie Cambell were introduced. I also received a introduction as well, as the Exec. Director of the Epilepsy Association of Utah. Professionals were then introduced, such as Joel Stanley, Jason Broome, Dr. Mark J. Rosenfeld and others.
Finally, the moment everyone in attendance had been waiting for, Josh Stanley stood to address the group. The emphasis of where his motive is, for the work he does, comes from the heart. About a year and a half ago, he was introduced to Charlotte Figi and her family. He was moved by the experience of getting to know Charolette and wanted nothing more than to help her be able to actually live her life. For many families, Josh and his brothers at Realm of Caring are a godsend.
The strain of high CBD, low THC cannabis that was successful for Charlotte was new and had previously been nick-named "The Hippie Disappointment " due to the lack of psycho-activity of the product. Now it is called Charlotte's Web and from Charlotte's Web comes the product that Utah families in the H4CE group are searching for - Alepsia.
So, after words were spoken, questions asked, and food eaten we all headed to the Heber M. Wells building in Salt Lake City. All of the parents and I walked the few blocks and it was at this point that we come to the beginning of this post - change. It may have been an odd sight, or maybe it was majestic, I thought to myself, as we proceeded down the block. All of these people, dressed professionally, walking confidently and some nervously to the first of many official meetings that will come in this quest for Alepsia.
The Utah Controlled Substance
Advisory Committee Meeting for Alepsia -
a Hemp Based Supplement.
From about 3:00 pm to 4:20 pm, I tweeted what was going on during the meeting. I provide this information with the condition that you understand that there might be some misspellings due to a lacking of enough agendas (which provided the names) as well as some informality to fit the character limit of a tweet. Under these conditions, you are welcome to view these tweets on my personal twitter feed.
First came the call to order, introduction of the Committee Members, and introduction of the "provocative" topic, as they called it. Second came an introduction, by Rep. Froer, of why all of these people (parents, government officials and professionals) were there to speak on behalf of the Alepsia product. He also stressed how utilizing Alepsia, as a legal product and supplement would have long term ramifications, including economic benefit to Utah. He noted that there is scholarly research and interest for the product going on at three of the various major Universities in the State of Utah: BYU, U of U, and Weber State University. Yes, you read that right, research for a cannabis based product is happening at BYU.
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The request was made to have all of the parents who have children with a severe seizure syndrome to stand, in order to show exactly how much of a majority filled the room. And the thing of it is that there are a significant number of additional families who couldn't be in attendance
Then, Josh Stanley stood to address the Committee.
...stay tuned for the next installment to find out what Josh said to the Committee
