Translator: Queenie Lee Reviewer: Rhonda Jacobs
Alright. I am so stoked to be up here with you guys tonight
to talk about weed, bro!
(Laughter)
I'm just kidding with you guys.
We are going to chitchat just a little bit about medical cannabis, though, tonight.
(Laughter)
Back in 2010, I had the honor to help co-author a House bill
here in Colorado
that I had 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.
(Laughter)
It was terrible.
(Laughter)
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 could 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
(Inhales, blows out)
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 Figi.
(Applause) Yeah, you can clap.
(Cheering)
Charlotte, besides being dear to my heart, is a six-year-old,
and like most little six-year-olds -
Yup, there's Chase. There's her twin sister.
And like most six-year-olds, Charlotte, she 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.
(Laughter)
Charlotte's an explorer,
and for good reason, that we're 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.
Incites all kinds of different people, different things to different people.
To some people, it's the devil's weed, right?
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 three to eight feet tall, typically.
About every seven to ten weeks,
it'll produce a flower or a bud, as you know it,
but that's it, just a plant.
It even grows on six continents.
But it's a plant that Charlotte Figi 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 three months old
with a very, very rare and violent form of epilepsy,
known as Dravet syndrome.
And Charlotte will experience a very high number of what we call tonic-clonic,
or grand mal seizures -
about one every 20 to 25 minutes, guys.
And these seizures,
these seizures will last anywhere from 15 to 25 minutes.
So in essence, Charlotte's life is spent in a seizure and 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 seven daily different pharmaceutical seizure medications,
none of which control her seizures.
When Charlotte was five years old, her seizures had reached their worst.
And her medical team told the Figi family
things like "Start making preparations for her death."
She was probably not going to wake up from this.
The Figis reluctantly signed a do-not-resuscitate order for Charlotte
around this time.
She was sent home with a fitted chair, a feeding tube in her belly
as she'd lost all of her life skills,
and the family had to say their goodbyes.
Now -
Didn't look good for Charlotte. Didn't seem like she'd pull through.
But remember, thanks to my old friend Ben and that back pain epidemic,
it wasn't the end for Charlotte,
and the Figis weren't about to give up hope.
And they set out on a journey to find, of all people ... (Ha)
my family.
Well,
I come from a very, very large family. OK?
I'm the oldest of 11 kids.
Nope, we're not Mormon; we're not Catholic.
(Laughter)
Apparently, they were just incredibly fertile.
(Laughter)
And me and my five younger brothers, amazing brothers,
Joel, Jesse, Jonathan, Jordan, and Jared,
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 of these was essentially free of the psychoactive compound
that you all know is tetrahydrocannabinol, or THC, right?
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 is right around the time
that the Figis were signing their do-not-resuscitate order.
And as luck would have it,
Paige Figi found us in February of 2012.
Now, my brothers and I had been reading a lot of studies,
a lot of research,
that had been coming out of Israel from the 80s, 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 Hippie's Disappointment.
(Laughter)
And while it didn't prove useful to Ben,
it proved incredibly useful to little Charlotte.
And so when Paige called us that February, 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:
Charlotte was five years old.
And think about it for a minute.
We're going to give a five-year-old cannabis?
Literally, visions of this were popping in my head.
(Laughter)
Mm.
But we got over this, pretty quickly,
and we began to extract and formulate, and 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 0-1 per week.
(Cheering) (Applause)
Thank you.
And, Charlotte was off 100% of her pharmaceuticals.
No more pharmaceuticals.
(Cheering) (Applause)
Thank you.
Charlotte is now awake; she's alive.
And guys, a real special treat for you tonight.
(Video) Charlotte: Ballerina! Mother: Ballerina.
Child: Ballerina.
Mother: Dance.
(Tap shoes tapping)
(Video ends)
(Cheering) (Applause)
Isn't she amazing?
So we changed the name of the plant from The Hippie's Disappointment
and now the name is affectionately called Charlotte's Web,
in honor of Charlotte, and it always will be Charlotte's Web.
Now, Charlotte's 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 experiences.
And currently, there are over 200 families coming from all over the world to Colorado
to take part in our treatment program.
We're soon to move into California as well
where we literally have over a thousand children
with pediatric epilepsy and their families waiting for us,
and we'll be moving to other states as soon as laws will allow us.
And we have a very special young man here in the audience tonight.
Where are you at, buddy? Zaki Jackson?
There's my man.
(Cheers)
Buddy!
(Applause) (Cheering)
There's Zaki.
(Applause)
What's up, Bubba?
Right here!
Eh, man! Give me five.
Zaki Jackson is number two patient right after Charlotte,
a great friend of ours.
Zaki, unfortunately, he suffers from a syndrome known as Doose syndrome.
And before this treatment, Zaki was experiencing over 200 seizures a day.
OK? I'm happy to tell you guys now, on October 4th, in two weeks,
we're all going to get together
to celebrate Zaki's one year seizure-free anniversary.
(Applause) (Cheering)
And you know, it's very, very difficult for me as an outsider
to relay what this means to families,
and I wanted Zaki's mother, Heather Jackson, to tell you guys
what this has meant to her.
(Video) Heather Jackson: And I get to say, after almost a decade,
I get to meet him
for the first time, without all this seizure activity.
He had drugs.
If you can imagine waiting ten years to meet your kid!
(Video ends)
So, you can see, this has a positive impact on a lot of families.
So, in light of that, my brothers and I started a nonprofit organization
called the Realm of Caring,
and the Realm helps to provide support, resources,
education, physician-backed medical studies,
as well as safe and affordable access to our treatment program.
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
even further, as to why this plant is working so well for these children.
So, why is this plant working so well?
Well, cannabidiol has the highest anti-inflammatory
and neuroprotectant properties found in nature,
and CBD actually interacts with structures on the surface of brain cells
known as receptors,
and acting as that neuroprotectant and anti-inflammatory helps to decrease,
and as you've seen, even eliminate seizure activity.
Now, while we don't know,
it seems as though CBD is actually playing a role in the repair of brain function.
And research scientists and our doctors believe that this is why Charlotte,
Zaki, and other children in this program
are actually experiencing an ongoing progression
of motor, social and developmental skills,
meaning that they're actually coming back to cognition
more and more and more every day.
They're 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're showing incredible results in PTSD,
in migraines, depression, arthritis, cancer, and heart disease,
and even further studies, believe it or not,
are showing this little-known compound might have the capabilities
of helping to stop progression of Parkinson's, Alzheimer's,
ALS, MS, and diabetes.
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're just now, though, starting to wake up from that fear.
We're starting to replace that fear with acceptance,
understanding, and education.
What's happening? Amazing things, right?
Amazing discoveries.
And that's what happens whenever you're 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, OK?
After experiencing a five-year darkness- and fear-type nightmare.
I don't know how you'd feel,
but me, I'd feel like doing some exploring,
I'd 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 Figis family,
when they leave the state of Colorado on a family vacation with her medicine,
they become drug traffickers.
(Laughter)
Yeah, they look like a pack of hardened criminals to me, don't they to you?
(Laughter)
You know, 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.
Now, just how many more Charlottes?
How many more Zakis?
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 and trade
to save a 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.
And 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 Figi and her parents, Matt and Paige.
(Applause) (Cheering)
Can you say hi to everybody?
(Applause)
Host: I think she's fascinated with you, and we're fascinated with her.
(Laughter)
Oh, we've got more.
(Laughter)
Thank you so much, Josh.
That concludes our talk, but I wanted to ask a little bit more from the parents,
I mean -
How many other parents have you met,
and is there a network of people that are in contact the Stanley brothers,
and how's that going?
Paige Figi: There is a large network,
Amanda and Heather are running the 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 4,000 calls a month.
(Audience responses)
Host: I think there are some parents in the crowd tonight.
If you're a parent, can you say hello?
There's a couple.
I mean parent, yes -
I mean parents of -
Is there anything that surprised you about the treatment,
I mean, a) probably that it worked,
but is there anything else that wasn't covered in the talk?
PF: 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 this well,
and that had beneficial side effects.
There's not a one negative side effect, and it's just been beneficial.
That is unheard of with epilepsy.
Host: it's just an amazing story.
We have a break.
We were hanging out with Charlotte backstage.
It's just amazing to watch somebody grow,
and there's a lot more parents in the audience
that have been in contact with the Stanley brothers.
Thank you for being here. Thank you, Josh, amazing talk.
I really want to see that online.
PF: Thanks for having us.
JS: Thank you all.
(Applause) (Cheers)