The surprising story of medical marijuana and pediatric epilepsy | Josh Stanley | TEDxBoulder

Josh will sift through the propaganda, fear, and greed encompassing medical marijuana. Recently featured on CNN, Josh and his brothers developed a non-psychotropic strain of marijuana which is drastically reducing seizures for many pediatric epilepsy patients in Colorado. With millions facing life-threatening illnesses, Josh outlines the hurdles needed to effect social change and maps a path toward helping those who desperately need revolutionary medicine.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx

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)