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


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)

100 thoughts on “The surprising story of medical marijuana and pediatric epilepsy | Josh Stanley | TEDxBoulder

  1. One of the best talks I've ever seen. Very moving. The stigma/taboo & myths around Cannabis, need to stop. I'm exhausted with all the pills being handed out like candy and then controlled, and the medical community (doctors, hospitals) drug testing for marijuana on patients that should be using marijuana. Meanwhile, medicines that don't work, being changed repeatedly and the patients not having any improvement because cannabis is NEVER even suggested. Things must change, and access to it should also. Thank you for being so incredibly frank and passionate to find something that works for so many people and hopefully the world SOON. (Just have to put all of our voices together so we are ALL heard over FDA & other groups that are trying to keep people from the freedom to choose.)

  2. Hey. This is America. We don't give a shit about our children. 1 out of 5 live in poverty…millions are homeless…we offer their lives as human sacrifices to the gods of Wall Street. Look at the children in Flint, MI, being poisoned, so Nestle can make some more profits!!!!
    When America starts to care for our children…then…maybe this flower will be available as medicine to all?
    Until then, I'm not holding my breath…our children are at risk in this country!

  3. I grow and use cannabis for chronic joint pain. It allows me to rest at night with no problems working the next day. I grow my own so it's basically free. I've told my Dr of my choices and he approves. No opioids for me please. BUT..I could live with out cannabis..my ailments are nothing compared to those of the truly suffering. Many of them could benefit from rso..and far be it from me to deny them this treatment. It may not work..but maybe…just maybe… it will.

  4. Thanks to the Stanley family for devoting their lives to this cause. I've heard about the millions in research and development required to bring new drugs to market. The truth is that much of that R&D is done in university labs and hospitals funded by taxpayers. Charlotte's Web has no such financial benefits, the Stanleys funded research and now that patients are benefiting, more private donors are participating.

  5. You want to know what the problem is? It's the name. It comes from the same strain or close to the plant that gets you high but is totally different.

    It's too late now but if were called …. Rejuvenation oil for example we would be on a different road

  6. If you do go out and buy this product be very careful where you get it. Some of the products available now are home made and contains little or no cbd. Do your research before wasting your money on a worthless products.

  7. There is a complete difference between this strain and the strains that have up to 35 percent THC— its not partying weed. People need to try and stop being so judgemental and relax.

  8. they should move up here to Canada and get a medical card…then you can see all of Canada and take your medication with you.

  9. My friends is in jail, my friend have been shot, i have seen mothers crying and stoped to work as normal again. My friends out here in the streets are chased, harrased and beaten. My suburb is destroyed and forgotten. Our young brothers in the streets have build a hate against the police and the police against them, why? Because a politican and his governement says Cannabis is deadly drug without any EVIDENCE and people believes them, the middle class and lowerclass will never start to live like humans is created for if Cannabis does not get legal, it makes me upset and builds a strong hate against governement and rich blind manipulated people.

    The Cannabis is also the medecin for us "Criminals" in the suburbs of Sweden. It helps us relax and forget hate, it helps against stress, anxiety and depression that young and "Criminal" marked people are strugling with. Please Sweden legalize it in medical way atleast so we can enjoy a little bit of freedom and peace. I dont want to see another friend been locked up or shoot to death because of the "Cannabis war". Solution for Swedens suburb problems is legalization or atleast in medical way.

  10. oh wow hilarious I'm so impressed with your ability to make puritans who should kill themselves because their puritan sensibilities are killing me!!!!!!! I fucking hate you all!!!!!!!!!! I have epilepsy. I'm pissed off. I want the THC though and I'd give my kid THC.

  11. you see this is why before 1937 the American Medical Association protested against the prohibition of marijuana and why it was patented in America as a neuroprotectant. Unfortunately the racist propaganda of Harry J. Anslinger has been more popular, no one cares about me, they'd rather see me die, so maybe I should die, I don't want to talk to any people out there you're all bad people out there who enjoy hating people for no reason more than helping people who pass out and vibrate. Pretending like you don't still think about the effect on the degenerate races is the reason you want it illegal, you haters, you evil people going to hell. Wooh I sound crazier than a mo-fo. It true dat though.

  12. ….and yet the the US government and the DEA still claim that there are no medicinal benefits from cannabis.
    Just how much money is BIG PHARMA paying them ???

  13. It's silly with "what if this and what if that?" These children are suffering, and numerous number of adults with cancer are suffering as well. And many are at the death's door and honestly at those stages the long term effect, if any, really does not matter! ALL fifty states must legalize marijuana. It was falsely made law by a politician in the 1930s. Ignoring all of the good data.

  14. Big Pharma = Big Check , but they control the market an banks so guess what…………… BIg Pharma hates Weed! Although Pfizer said : Legalization of cannabis will not stop us from making money! While other Drug company's are totally pissed off, about weed, Pfizer is all for it!

  15. Who the hell gave this a thumbs down!? Hang your heads in shame or maybe try the full strength stuff and chillax people.

  16. ~ CANNABIS DEDICATED TO HUMANITY ~ The States Given legalization To   Use Marijuana (half the nation) Authorized By Law  For Medicinal Treatment, Personal Therapy, or Social Recreation   These Demographic  Represent Over Half The Nation Changing Sooner Than Later.. Pioneers In The New Frontiers Of Cannabis Marijuana Boasting A Plethora Of Materials, Medicines And Long Awaited Cures.. Many Self Medicated Users, Prescribed Patients, Recreational Adults, And Curious Minors Will Find  Cures.. Wondrous Revelations.. Super Materials.. hundreds of thousands self medicated veterans Are Dedicated And Convinced.. author unknown.. JohnGz S..o0O..~ ~ UpInSmoke.. God Bless All..Vietnam 1968-1970 Specialist 4th Class JohnG turbine generator troubleshooter..Gzs..o0O ~ ~

  17. When there's no justice in the law its the citizen's right AND duty to break that same law … that's how we climbed down from the tree branches.

  18. I'm assuming that the current Charlotte's Web Hemp Oil is not the same as the tincture Charlotte is receiving as treatment, since hemp oil is legal in all 50 states? Can someone clarify this for me? I just ordered some Charlotte's web for my post-concussion syndrome and now I feel like I just wasted my money.

  19. CBD is a
    neurotransmitter being released from the post-synaptic neuron to the pre-synaptic
    neuron which modulate the calcium/magnesium channel which in turn modulates how
    much excitatory Neurotransmitter (ex.: glutamate) are being released from the
    pre-synaptic neurons. In short, it calms downs the nerves. Epilepsy is nerves
    hyperactivity, CBD helps calming down. Yes there are reasons to “fear”
    cannabis, because it contains THC , THC is known to have negative psychological
    effects. A great comparison would be to separate alcohol from red wine to use
    the grapefruit juice to help cure certain disease, as we know, alcohol has many
    negative side effects (road accidents, negative behaviors). So CBD therapy for
    epilepsy has promising health benefits, “Marijuana therapy” containing THC ,
    there is no such thing. THC, like alcohol must remain as having potentially
    negative effects on society.

  20. Thankfully, now in 2017/2018 it finally becomes legal in Canada as well. I desperately need this for my daughter. We have tried every single medication imaginable, including ketogenic diet. Nothing really works. Today, my daughter has had 16 seizures. Not even Under the tongue Lorazepam works.

  21. Hallelujah….the world is waking up  to the real purpose of this God given plant.  Thank you Stanley Brothers!!!!

  22. This is extraordinary. I hope this country wakes up, and wakes up soon, to realize that Cannabis is not a schedule 1 narcotic, never should have been labeled as such.

  23. It's hard to believe there are 80 people in this world that don't want kid's to stop suffering from seizures. What's wrong with you, did you even watch this video?

  24. For anyone who will know this my daughter has meningitis valley fever and I am looking at other options does anyone know if it works for any of her symptoms she's only 15

  25. Thank god that I have a script for this medicine. No more Keppra, which works, but also has unwanted side effects.

  26. Need some help guys. Does CBD oil help cerebral palsy and alzheimer's patients? And does CW ship these CBD oil outside of the US?

  27. People use alcohol, which has a tendency for violence, why is Cannabis, that does not have that tendency, not allowed? Becaue it is too useful. The only reason. But it is good to not have the psychoactive part bred out of Cannabis so it can be given for medicinal reasons. So why is it not allowed when it used to be required for farmers to grow because it was necessary for the government to use. It's all a matter of money.

  28. I’m ABSOLUTELY disgusted by the government and their corruption in terms of collusion with the pharmaceutical companies. They’re literally allowing their own citizens to suffer and DIE because of greed.

  29. Please don't bring stigma to cannabis. We've been clouded for a long time. It feels as though we are not even existing. It's sad to believe, but this is our world, so let's make it right, right now!

  30. Everything the government tells you do not believe whatever they say is good for you is bad and whenever they say is bad for you is good

  31. And the Great thing is That Most of the Breeders and Cannabis Community ,Are all good folk.There will be a few out there that will have seen a way to get more for these strains.But the major part of those growing these will be only to happy to help.RESPECT Stanley Brothers

  32. I don't think that Some peoples views will ever change on Cannabis,They just do not understand that there is a difference in cbd and thc .I have tried to tell a few of the older folk ,but you just can get it through to them.Its not there fault,its the info they have got about the plant over the years,from so called people who are supposed to know about these things.DOCTORS.But to be honest the way they think about cannabis is what they have been told ,just from looking at the effects ,because next to no research has been done,up untill the states in america made it legal ,And the bits of stuff from Amsterdam

  33. Just found this particular brand in Arkansas I’m so thrilled! God Bless the Stanley Brother’s and the realm of caring organization! Praying legislation is passed so that everyone can be able to use this wonderful medicinal plant.

  34. Awesome, awesome, awesome! Thanks Josh for all the hard work along with your brothers! You are a blessing to many people, thanks for sharing!

  35. Good vid. I have a card, and use this as a medication, rather than a recreational hobby. I use it to treat post-op chronic pain, and as a replacement for anti-convulsants. This medication saves me from a small pharmacy of medicine that I would otherwise need to take. Thumbs up, and added to favorites.

  36. it is MEDICINEEEEE….we have got to stop calling it a DRUG….even friken speed has a use in the medical field but marijuana is gonna be classified as a dangerous drug? pretty clear the ones in charge do NOT have any of our backs!!

  37. I wonder what it could do for someone who has severe brain damage my step daughter was born with a stage 5 brain hemorrhage she cant walk talk or see. She has never spoke a word and she has seizures they are under controlled on medicine but she is non verbal. I would love to see if it could wake her up!

  38. Great talk on a great product. Without medical, I’d need to be on anticonvulsants, and be in constant chronic pain. With medical, I don’t need to be on massive, and pricey meds.

  39. What a fantastic talk…informative and funny….what a crazy world when we know theres stuff out there that works yet wont allow it..
    There are mainly two people to blame for cannabis being criminalised.. John Rockefeller and President Nixon….two corrupt co conspirators to enable Rockefellas business Standard Oil to continue to sell its oil

  40. In india before 1900 cannobies are used ayurvedic medicines, and other products… But british delebrately banned it… In shivpuran and atherveda there is mentioned cannobies as medicinal plant… Now it is banned in india… Indian govt. Should reconsider its decision to unbanned cannobies…

  41. Yeah I live in a state that doesn't allow marijuana I have Intractable Epilepsy and me and my parents can't afford moving to a state that allows marijuana like they do other epilepsy epilepsy meds and the epilepsy meds I am taking I am always changing cause they don't work I just think they need to legalize marijuana in every state like they did alcohol and cigarettes.

  42. US Federal laws on Cannabis were manufactured against POC, and meant to feed the prison industrial complex. Capitalism truly kills, and imprisons. As long as US governments get millions in legalized bribes from big pharma and PIC lobby groups, nothing will change.

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