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

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.

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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.

We have a very special young man here in the audience tonight. Where are you at, buddy? Zakai Jackson? There’s my man, buddy?

Zakia Jackson, our number 2 patient, right after Charlotte, a great friend of ours. Zakia unfortunately suffers from a syndrome known as Doose Syndrome. Before this treatment Zakia was experiencing over 200 seizures a day. I’m happy to tell you guys now on October 4, in two weeks, we’re all going to get together to celebrate Zakia’s one year seizure free anniversary. It’s very, very difficult for me, as an outsider, to relate what this means to families. And I wanted Zakia’s mother, Heather Jackson, to tell you guys what this has meant to her.

Heather Jackson: And I get to say after almost a decade for the first time without all this seizure activity, we had drugs that you couldn’t imagine.

Josh Stanley: So, you see, this has a positive impact on a lot of families. In light of that my brothers and I started a non-profit organization called The Realm of Caring. The Realm helps to provide support, resources, education, physician-backed medical studies as well as safe and affordable access to our treatment program.

And currently the Realm is in the middle of setting up study protocols with some of the country’s top epileptologists in order to start getting down to the bottom of the science and even further as to why this plant is working so well for these children.

So why is this plant working so well? Well, Cannabidiol (CBD) has the highest anti-inflammatory and neuro-protectant properties found in nature. CBD actually interacts with structures on the surface of brain cells known as receptors and acting as the neuro-protectant and anti-inflammatory helps to decrease and, as you’ve seen, even eliminate seizure activity.

Now, what we don’t know — it seems as though CBD is actually playing a role in the repair of brain function. Research scientists and our doctors believe that this is why Charlotte, Zakai and other children in this program are actually experiencing an ongoing progression of motor, social and developmental skills – meaning that they are actually coming back to cognition more and more every day. They are getting better, guys. I mean it’s phenomenal.

I think it’s also important to note here that epilepsy is not the only thing that CBD seems to be helpful for. According to some of our early studies and studies out of Israel right now they are showing incredible results in PTSD, in migraines, depression, arthritis, cancer and heart disease. And even further studies, believe it or not, are showing that this little known compound might have the capabilities of helping to stop progression of Parkinson’s disease, Alzheimer’s, ALS, MS and diabetes.

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Now I think it’s quite clear we all know very, very, very little about this plant. We’ve lived in the last 80 years in this country under a cloud of propaganda and fear. We are just now, though, starting to wake up from that fear. We are starting to replace that fear with acceptance, understanding and education.

But what’s happening? Amazing things, right? Amazing discoveries and that’s what happens whenever you are able to lay fear to rest. But we have a long way to go here. I want you all to think about something with me real quick. Charlotte is awake now, after experiencing a 5 year darkness and fear type nightmare. I don’t know how you’d feel but me, I feel like doing some exploring. I feel like seeing the world getting out there.

Well, imagine Charlotte feels very much the same yet picture this. She can’t even leave the state of Colorado. If she does she faces a life and death situation without her medication. Not to mention the fact that the minute the Figgy’s family, when they leave the state of Colorado on a family vacation with her medicine they become “drug traffickers.” Yeah, they look like a pack of “hardened criminals” to me, don’t they to you?

We can joke about this and we can bring light to this because, honestly, the situation is ludicrous people, it’s ludicrous. Charlotte can’t leave the state. How many other children can’t get into the state to get this treatment? It’s not that easy to pack your whole life up and move from wherever you are in the country or the world for that matter and just relocate to Colorado. And furthermore, they shouldn’t have to.

Colorado children are not different physiologically than a child who lives in a Midwestern state. It hurts me to tell you this next part but this is a reality we face all the time here. Just last week a very special young boy in Indiana with Dravet Syndrome passed away because his family couldn’t get out here to get the treatment in time. And we couldn’t send it to him because the law doesn’t allow it. If the law allowed it, it’s a “next day” air package. It’s that easy.

Folks, children are dying. Come on. We can do better than this. As humans we must do better than this. And I’m confident that we will do better than this.

Just how many more “Charlottes”, how many more “Zakais”, how many more children are out there that this plant could potentially provide relief for? This begs us to ask the question: Are we willing to change our national view on medicinal cannabis in trade to save one thousand more lives? How about just one more life?

Well, guys, I have a very special friend here tonight who strongly believes this to be the case. If you all don’t mind I would love to introduce you to one of the most courageous little girls I’ve ever met in my life. Please welcome and meet Charlotte Figgy and her parents, Matt and Paige.

Paige Figgy: Thank you.

Josh Stanley: Say hi to everybody.

Unknown speaker: I think she’s fascinated with you and we’re fascinated with her. Oh we’ve got more. Thank you so much, Josh. I mean that concludes our talk. But I wanted to ask a little bit more maybe from the parents. I mean, how do you — how many other parents have you met and is there a network of people that are in contact with Stanley Brothers and how’s that going?

Paige Figgy: There is a large network. Amanda and Heather are running Realm of Caring and there’s a huge amount of people coming here, having to move and uproot and coming here, I can’t even give you a number, we take 4000 calls a month.

Unknown speaker: I think there’s some parents in the crowd tonight. If you’re a parent can say hello? I mean parents of — is there anything that’s surprised you about the treatment — I mean a) probably did it work but is there anything else that wasn’t covered in the talk?

Paige Figgy: It was the first treatment that we tried and we tried everything, even diet that seemed seemingly harmless. It was the first treatment we tried that worked as well. And that had a beneficial side effect. There’s not a one negative side effect and it’s just been beneficial. That is unheard of with epilepsy.

Unknown speaker: It’s just an amazing story. We have a break. I want to be – if you want to hang out with Charlotte backstage it’s just amazing to watch them to grow and there’s a lot more parents in the audience that have been in contact with Stanley Brothers. Thank you guys so much for being here. Thank you Josh. Amazing talk.

Paige Figgy: Thank you for having us.

 

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