Josh Stanley: The Surprising Story of Medical Marijuana and Pediatric Epilepsy (Transcript)

September 12, 2016 12:01 am | By More

Full transcript of medical marijuana entrepreneur Josh Stanley’s TEDx Talk: The Surprising Story of Medical Marijuana and Pediatric Epilepsy at TEDxBoulder conference.

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Josh Stanley – Medical cannabis advocate and entrepreneur

All right. I am so stoked to be up here with you guys tonight to talk about weed, bro. I’m just kidding with you guys. We are going to chit chat just a little bit about some medical cannabis tonight.

Back in 2010, I had the honor to help co-author a house bill here in Colorado that I’d hoped would help very seriously ill patients get access to medicinal cannabis while allowing for responsible rules and regulations around what I think most would consider a very misunderstood industry. However, what happened, in my opinion, were some of the most loathsome examples of the misuse of cannabis law and cannabis usage that I could have imagined.

Now you guys, come on, you all remember this, right? This is back when that horrible, horrible epidemic of back pain just swept across college campuses. Oh, it was terrible. People like my friend Ben here, for example, right? Yeah, he never tires of thanking me for all the work that I did so now he can enjoy the freedom of his recreational pleasure. That’s not really what I do, so that got under my skin for some time, because I really felt like all of the work that we did had quite literally just gone up in smoke.

But, you know what? My disdain for this type of abuse didn’t last that long, because I realized that if it weren’t for old Ben here and the back pain epidemic, none of us here tonight would have ever had the opportunity to meet a very special friend of mine: Charlotte Figgy. You can clap.

Charlotte, besides being dear to my heart, is a 6-year-old and, like most little 6-year-olds, Charlotte just loves the color pink, loves to go play in the woods with her twin sister, Chase, and her older brother, Max. I hear you baby.

Charlotte is an explorer and for good reason that we are going to get into here a little bit later, she also happens to be one of the most frequent cannabis users that I know. There it is…there’s the word: cannabis. It cites all different kinds of people, different things to different people. To some people it’s the “devil’s weed”, right? To others it’s just a pseudo-medical excuse to get high and, yet, others find true medicinal benefit with it.

But at the end of the day what are we talking about here? We’re just talking about a plant. OK, this is a plant that grows anywhere from 3 to 8 feet tall typically, about every 7 to 10 weeks it will produce a flower or a “bud” as you know it but that’s it. It is just a plant. It even grows on 6 continents but it’s a plant that Charlotte Figgy uses a lot of to control her grand mal seizures. And in no uncertain terms Charlotte’s life depends on this plant.

You see, Charlotte was diagnosed when she was 3-months-old with a very, very rare and violent form of epilepsy known as Dravet Syndrome. Charlotte will experience a very high number of what we call tonic-clonic grand mal seizures – about one every 20 to 25 minutes, guys. And these seizures will last anywhere from 15 to 25 minutes. So in essence, Charlotte’s life is spent in seizure in a catatonic state. Twice Charlotte’s mother, Paige, has had to bring her back to life using CPR. At any given time Charlotte will be on 7 daily different pharmaceutical seizure medications, none of which control her seizures.

When Charlotte was 5-years old her seizures had reached their worst. And her medical team told the Figgy family things like, “Start making preparations for her death. She’s probably not going to wake up from this.”

And the Figgys reluctantly signed a “Do not resuscitate” order for Charlotte around this time and she was sent home with a fitted chair, a feeding tube in her belly and she had lost all of her life skills. The family was saying their “good byes.”

Now it didn’t look good for Charlotte. It didn’t seem like she would pull through. But remember, thanks to my old friend, Ben, and that back pain epidemic, it wasn’t the end for Charlotte. The Figgys weren’t about to give up hope and they set out on a journey to find – of all people – my family.

Well, I come from a very, very large family. OK, I’m the oldest of 11 kids and nope, we are not Mormon. We are not Catholic, nope. Apparently we are just incredibly fertile. Me and my five younger brothers, amazing brothers – Joel, Jesse, Jonathon, Jordon and Jarred — and our honorary brother, Dr. Sanjay Gupta, we set out on a mission, a very unique mission to breed a special strain of cannabis plant — one that was essentially free of the psychoactive compound that you all know as tetrahydrocannabinol or THC and one that was very, very high in the little known, non-psychoactive compound called CBD or cannabidiol.

Well, we succeeded in this effort in January of 2012. And this was right around the time that the Figgys were signing the “do not resuscitate” order. And as luck would have it Paige Figgy found us in February 2012.

Now my brothers and I have been reading a lot of studies, a lot of research that had been coming out of Israel from the ‘80s and ‘90s and up to today. On this research although, strangely enough, seems like America knew about this 65 years ago but that’s a talk for another day.

My brothers and I thought that this little known compound might just be the missing link to provide some validity in the realm of cannabis research. And as it turns out we were correct.

Now the plant that we had created while it may have immense medical benefits – completely non-psychoactive, OK? Completely useless to Ben, so we named the plant “The Hippy’s Disappointment”. While it didn’t prove useful to Ben it proved incredibly useful to little Charlotte. And so when Paige called us that February and told us of Charlotte’s condition we were ready to jump in. We were ready to help. In fact, we couldn’t wait until Paige dropped the bomb on us that Charlotte was 5-years-old.

Think about it for a minute. We’re going to give a 5-year-old cannabis?! Literally visions of these were popping in my head. But we got over this. Pretty quickly we began to extract and formulate in ratio a non-psychoactive, lab-tested pediatric tincture for Charlotte. And I’m happy to tell you that within the first administration Charlotte went from having a seizure every 20 to 25 minutes, that’s 400 a week, guys, down to 0 to 1 per week. Thank you.

And Charlotte was off 100% of her pharmaceuticals, no more pharmaceuticals. Charlotte is now awake. She is alive. And guys, real special treat for you tonight.

[Video clip]

Isn’t she amazing? So we changed the name of the plant from “The Hippy’s Disappointment” and now it is affectionately called “Charlotte’s Web” in honor of Charlotte and it always will be “Charlotte’s Web.”

Now Charlotte is not an isolated incident here. We currently treat over 40 pediatric patients here in Colorado with the same, similar and, believe it or not, even better results than what Charlotte experienced. And currently there are over 200 families coming from all over the world to Colorado to take part in our treatment program. We are soon moving to California, as well, where we literally have over 1,000 children with pediatric epilepsy and their families waiting for us. We are going to be moving to other states as soon as laws will allow us.

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