[Vision2020] Young girl's story could prompt lawmakers to relent on cannabis extract

Darrell Keim keim153 at gmail.com
Tue Mar 3 19:30:40 PST 2015


Here is an interesting article about the issue...  Seems to imply quality
control is an issue.

http://www.westword.com/news/charlottes-web-untangling-one-of-colorados-biggest-cannabis-success-stories-6050830

Charlotte's Web: Untangling One of Colorado's Biggest Cannabis Success
Stories
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By Joel Warner <http://www.westword.com/authors/joel-warner>
Wednesday, December 3, 2014 | 3 months ago

[image: Charlotte's Web: Untangling One of Colorado's Biggest Cannabis
Success Stories]
Thomas Pitilli

Eric Prine's uncontrollable seizures began in late 1992, not long after the
six-month-old's parents, Ronnie and Jennifer, took him to the doctor for
routine vaccinations. The near-constant seizures soon left Eric a shell of
his former self. "We lost every bit that was him," says Ronnie. "We never
saw any more smiles or crying or anything like that, just seizures."
Ultimately, mounting medical bills forced Ronnie and Jennifer to declare
bankruptcy. They sold the home they'd built in Lucedale, Mississippi, and
in 2004 moved to the Denver area so that Jennifer could take a nursing job;
Ronnie became their son's full-time caregiver.

Eric had stopped developing; at 21, he was the size of a five-year-old.
That's when the family was hit by more bad news: Chloral hydrate, the one
drug that seemed to decrease Eric's seizures, was being taken off the
market. Scouring the Internet for alternatives, Ronnie came across a
YouTube video of two children, Charlotte Figi and Zaki Jackson, whose
epileptic seizures had been drastically reduced thanks to a strain of
medical marijuana named Charlotte's Web, one that was high in a
non-psychoactive component called cannabidiol, or CBD. The strain was being
grown outside of Colorado Springs by six brothers -- Joel, Jesse, Jon,
Jordan, Jared and Josh Stanley -- and a nonprofit called Realm of Caring
had been established by Paige Figi and Heather Jackson, the mothers of
Charlotte and Zaki, along with Amanda Stanley, Joel Stanley's wife, to
connect potential patients with the medicine.

[image: Five of the Stanley brothers at their grow.]
Five of the Stanley brothers at their grow.

Ronnie called the number for Realm of Caring listed on the YouTube video
and, after he'd secured a medical marijuana card for Eric, Paige and Amanda
showed up at his door on April 28, 2013, with Eric's first dose of oil made
from Charlotte's Web -- free of charge. That night, Ronnie and Jennifer
inserted fourteen drops of the oil into the feeding tube that ran into
Eric's stomach. After a single seizure the next day, Eric's seizures went
away.

"I was amazed," says Ronnie. Like many parents of kids on Charlotte's Web,
he began volunteering with Realm of Caring. It was like they were all part
of one big, growing family, and he wanted to help spread the word. He
staffed Realm of Caring's booth at the Capitol Hill People's Fair that
June. Then, after a CNN documentary titled Weed spread Charlotte Figi's
story across the nation in August (Eric was filmed as well, but he wasn't
included in the program), Ronnie volunteered to answer the calls that
flooded in from parents with sick children. As one of the first patients
after Charlotte and Zaki to receive Charlotte's Web, Eric was featured on
Realm of Caring's website -- in a story describing how, for the first time
in 21 years, he was smiling and playing with his mother's hair.

But then Eric developed complications; he began secreting clear mucus from
his mouth. Such secretions can be a serious problem for those with severe
neurological conditions, since they can lead to aspiration and pneumonia.
When Ronnie asked people at Realm of Caring whether other patients had
experienced secretions, he never got an answer. He'd become used to long
conversations with Joel and Amanda Stanley, but now he couldn't get his
phone calls or e-mails returned. "They seemed so willing to help at the
beginning, then all of a sudden it all went away," he remembers. And then,
sure enough, a few weeks after the CNN documentary aired, Eric ended up in
the hospital with pneumonia. At the same time, the Prines ran out of
Charlotte's Web. When Ronnie asked for more, no one at Realm of Caring
responded for several days; finally, he was told that the group had stopped
delivering. So Ronnie drove two hours to one of the Stanley brothers'
dispensaries in Colorado Springs while his wife waited with Eric at the
hospital.

The lack of communication wasn't the only change. After months of being
seizure-free, every now and then Eric would have a seizure again. Ronnie
noticed that on the lab results that came with each batch of Charlotte's
Web, the oil's amounts of CBD and THC, the psychoactive component, seemed
to be shifting; he wondered about the medicine's potency. And it was no
longer free: The price for a few ounces had gone from $100 to $200 to $350
and then, finally, $700.

By now, Ronnie had stopped volunteering with Realm of Caring. He didn't
like the group's failure to respond to his queries, and he didn't like
being told that he couldn't have conversations with parents calling for
information until they'd signed a non-disclosure agreement. "It was sad,"
he recalls. "You had parents calling you from everywhere, trying to get the
medicine, and I couldn't talk to them."

By this past spring, Eric was becoming bloated, as if fluid was building up
in his body. Then his secretions turned milky white. Finally, in late
April, he began having trouble breathing. His parents rushed him to Saint
Joseph Hospital in Denver, where doctors found that his liver wasn't
producing enough albumin, an important blood protein. Soon they also
diagnosed him with a bacterial infection, one that he would never recover
from. On May 10, as Ronnie and Jennifer sat quietly in Eric's hospital
room, the doctors took their son off life support. Eric was buried on May
17, 2014 -- his 23rd birthday.

They received a condolence card from Realm of Caring, but no one from the
organization attended Eric's funeral. Amanda Stanley was there, but by that
point, she no longer worked for the nonprofit. And Ronnie was surprised
recently to see that Eric's story is one of only two original accounts no
longer on Realm of Caring's website; the other is about a child who was
kicked out of the program after his mother provided medicine across state
lines. (According to Realm of Caring, Eric's story was probably removed to
add a newer account.)

Ronnie no longer wants to know whether, after allowing his son to live
nearly seizure-free for almost a year, Charlotte's Web caused Eric's
secretions and his final illness. "If Charlotte's Web contributed to it,
that would mean I helped cause it," he admits. "I don't want to know if
that was the case."

But he still feels let down by Realm of Caring. "It's almost like you're a
family member, and then you're not a family member anymore," he says. "I
think they got a little too big too quick. I think they tried to spread
themselves too far before they helped the ones they started with."

Ronnie isn't the only one worried that people are getting tangled in the
Charlotte's Web saga. While the story of this seemingly miraculous
marijuana plant has gone international, spurring parents to move to
Colorado to obtain the oil and prompting legalization efforts across the
country, concerns are mounting about the famous strain. Parents are facing
off against parents, activists are squaring off against activists,
nonprofits are clashing with nonprofits -- and suddenly, one of the
greatest success stories to come out of Colorado's marijuana movement isn't
looking quite so miraculous.

*Continue to keep reading about Charlotte's Web, one of Colorado's biggest
cannabis success stories.*

[image: Sanjay Gupta with Charlotte Figi.]
Sanjay Gupta with Charlotte Figi.

Paige Figi understands the frustration, the unending questions that come
via e-mail and phone calls to Realm of Caring: *Why can't I get Charlotte's
Web? Why is there such a long wait? Why aren't you returning my messages?*

Communication has been a problem, she and her colleagues concede. While
what's now known as Stanley Brothers Social Enterprises, the for-profit
side of the operation, boasts 36 employees who grow and process the plants,
Realm of Caring, the nonprofit side, has just four employees and a team of
volunteers to handle the hundreds and hundreds of inquiries coming in every
week. They're working on being more responsive, working to explain why
producing and distributing Charlotte's Web isn't easy. Still, Paige knows
their efforts won't stop the growing antagonism, won't stop Facebook groups
like "Realm of Caring -- WARNING PAGE," which now has more than 3,000
members, from popping up. She thinks some of the bitterness is driven by
people envious of Charlotte's Web success, folks who'd like a piece of the
action. As Heather Jackson puts it, "When you are out front, you get a lot
of arrows in your back."

But Paige also recognizes that anger is inevitable when you're working with
parents of children so sick that every day is a struggle for survival. When
you're dealing with trauma like that, it's almost easier to find something
to rail against, someone to blame. People once used social media to spread
the miraculous story of Paige and her daughter; now some of them are using
it to attack her and her colleagues. "I get it -- I'm a mother," says
Paige. "It is very emotional for these people when they think there is
nothing left to try."

Not too long ago, Paige was at that point herself. Her daughter Charlotte,
born in 2006, has Dravet syndrome, a rare but extremely serious form of
epilepsy, one that buffeted her with hundreds of grand mal seizures each
week and left her functioning at the level of a newborn. None of the drugs
or therapies that Paige and her husband tried seemed to help Charlotte.
Then in 2011, they heard about Jason David, a man in California who was
treating his son's Dravet syndrome with medical marijuana. It took months
to find doctors willing to sign off on Charlotte's medical marijuana card,
months to find a dispensary willing to provide her with product.
Eventually, however, Paige was connected with the Stanley brothers,
dispensary owners who had been growing a high-CBD strain to treat adult
cancer patients that they called "Hippies' Disappointment" because it was
so low in psychoactive THC.

Oil made from the strain also helped Charlotte -- so much so that her
seizures dropped to just a handful a month. The brothers, inspired, renamed
the plant "Charlotte's Web" in her honor. This was the story -- the little
girl whose recovery shocked everyone; her well-spoken, passionate parents;
the six clean-cut brothers who helped them -- that caused CNN chief medical
correspondent Sanjay Gupta to announce that he'd changed his mind about
weed in that August 2013 documentary, triggering a media onslaught ranging
from a TEDx talk to a *Time* magazine feature to an appearance on *The View*.
Soon there were other stories of parents like the Figis who were fighting
for this unconventional medicine, other stories about children like
Charlotte who were taking the Stanleys' oil and experiencing
near-incredible recoveries.

Those stories led to skyrocketing demand for Charlotte's Web -- without
enough product to go around. According to Realm of Caring, there are now
more than 12,000 people around the country on its wait list to receive
Charlotte's Web -- compared to just 350 or so patients, mostly children,
who are actually receiving oil made from the strain, at five cents a
milligram, to treat epilepsy and other ailments. Since marijuana can't be
moved across state lines, most of those on the wait list can't obtain
Charlotte's Web now anyway. That's why many are moving to Colorado or
California, where the country's first Realm of Caring licensee began
operating earlier this year. So far, 115 families that have moved to
Colorado are using Charlotte's Web, and 135 more new state residents are
scheduled to receive their first batch of oil in the next month. But that
still leaves a lot of families waiting -- more than 3,900 in Colorado and
California alone.

According to the Colorado Department of Public Health and Environment, as
of September 30, 427 minors in Colorado were approved to use marijuana --
up from 160 last November. Since the CNN documentary aired, Children's
Hospital Colorado has seen a surge of new pediatric epilepsy patients. "For
us, the children who were moving here to Colorado were really complex
cases," says Kevin Chapman, a neurological specialist at the hospital and a
professor at the University of Colorado Denver. "Not just seizures, but
they were having problems with swallowing, feeding, cerebral palsy --
medically complex kids. And many of them showed up at our doorstep without
any previous medical records, other than what parents could recall."

Every Sunday in Colorado Springs, caregivers Mark Pedersen and Regina
Nelson hold a potluck at their home for new "marijuana refugees," as
they're called, providing the parents with information on how to correctly
dose their children with oil, how to find support services. "Parents are
coming here with little or no money," says Pedersen. "I have to tell them:
Be prepared. If you don't have some sort of group out here or someone to
help you, it can be very hard."

Tommy Turner didn't have anyone to help him when he and his
fourteen-year-old son, Coltyn, arrived in Colorado on March 4, 2014,
looking for Charlotte's Web. Two years earlier, Coltyn had been diagnosed
with Crohn's disease, a debilitating form of inflammatory bowel disease
that left him dangerously sick, in extreme pain, stunted for his age and so
weak that at times he was confined to a wheelchair. Tommy and his wife,
Wendy, had put Coltyn through a gauntlet of expensive, painful medical
treatments, with nothing to show for it. When they heard that medical
marijuana could help with Crohn's disease, they decided to give Charlotte's
Web a try. After Realm of Caring didn't respond to their e-mails or phone
calls, Tommy decided to take a desperate step: He packed Coltyn into his
Ford Focus and drove to Colorado, leaving Wendy and their two other
children in Illinois. "I figured if I go knock on their door, they are
going to help us," Tommy remembers.

But when they arrived at Indispensary, the Colorado Springs dispensary
owned by the Stanley brothers that distributes Charlotte's Web, the Turners
were told they couldn't be helped because they weren't part of Realm of
Caring. Tommy and Coltyn spent a week driving around the Front Range,
looking for other options. Tommy even bought some pot from a Denver
recreational marijuana store and tried to cook it into oil in their hotel
room as Coltyn sprayed Febreze to mask the smell. Then, finally, Paige Figi
responded to one of the e-mails they'd sent from Illinois. She walked them
through the registration process that, once Coltyn had his medical
marijuana card, would designate Realm of Caring as his caregiver. That
meant the organization would be responsible for growing the 24 marijuana
plants he was allowed by his doctors.

After that, while the rest of the family moved to Colorado, they waited.
They're still waiting today. "It takes three to four months to get
medicine," says Wendy Turner. "Why do we have to wait so long to get our
plants?" Eventually, the Turners found another caregiver who's been
providing them with high-CBD marijuana; a recent colonoscopy indicated that
Coltyn's once-ravaged colon is almost completely healthy.

Moriah Barnhart moved to Colorado Springs last December with her
three-year-old daughter, Dahlia, who'd been diagnosed with an aggressive
brain tumor, hoping to obtain Charlotte's Web. The two spent months waiting
for Realm of Caring to let them know their oil was ready, but it never
happened. The only product that Moriah was able to obtain was four small
syringes of high-THC oil donated by Phoenix Tears Foundation, an
organization providing cannabis to cancer patients. Finally, after six
fruitless months in Colorado, she and her daughter moved back to Florida.
"It was just awful," she says of her time in Colorado. "We were basically
stuck at home with no income and no savings. We were left stranded."

Heather Jackson, now CEO of Realm of Caring, understands how frustrating
the wait list can be for parents. "Not being able to serve families
immediately, that does bother me a lot," she says. One of the main reasons
for the lengthy wait times, she explains, is Charlotte Web's semi-annual
harvest cycle, with a new crop planted every March and October. So if a
family like the Turners signs up after the March planting, their son's
assigned plants wouldn't even begin to be grown until the following October.

In the meantime, families like the Turners aren't allowed to grow their
own; Realm of Caring doesn't release tissue cultures of Charlotte's Web so
that others can try to grow it -- not even to parents on the wait list.
It's partly for patients' own safety: "I don't know how many stories I've
heard of people in Colorado, California and Washington blowing up their
kitchen trying to make cannabis oil, but it does happen," he notes. But
it's also to protect the operation's proprietary investment and the
product's credibility. "A trademark is there so a buyer can verify the
source of a good," says Joel. "And when you are talking about a product
that can save a life, when you are talking about something that important,
every consumer should have the right to verify the source of that good."

"If they just gave their plants away to anyone, there are many things that
could go wrong," echoes Liz Gorman, a Realm of Caring parent, in a
statement provided by the organization. "First, someone else may grow it
differently, not grow it organically without pesticides and try to pass it
off as the same Charlotte's Web that we have access to for our children. If
any child were to be harmed by consuming oil extracted improperly or from a
plant that isn't grown the same way and with the same attributes, it could
negatively impact the Stanley Brothers' ability to make our medicine."

Denise Lovett would disagree. The parent of a child with intractable
epilepsy living in northern California, she was excited to learn late last
year that Realm of Caring would be opening a California wing. But after she
heard that the operation had a policy of not distributing tissue samples,
she removed her son from Realm of Caring's wait list. From what she'd
learned while researching the medical marijuana scene, it was common
practice for caregivers to share pot clones and seeds with those in need.
"The one strain that helps sick and dying children, they are going to hang
on to that one?" she asks. "It just blows my mind." She's still looking for
an alternative, still looking for someone who can provide high-CBD cannabis
oil for her son. But she's willing to wait until she finds the right
caregiver for him.

"I need to find people who really love the plant," Denise says. "I don't
need someone who wants to set themselves up as the next Walgreens of
cannabis."

*Continue to keep reading about Charlotte's Web, one of Colorado's biggest
cannabis success stories.*

[image: Summer Forrest Larsen with her son, Kingsley.]
Summer Forrest Larsen with her son, Kingsley.
Jim J. Narcy

At first, the tale of Kingsley Larsen sounds similar to other success
stories coming out of Realm of Caring. The terrible seizures that began
soon after Kingsley's birth at Denver's Rose Medical Center in 2008 and
never really stopped. The lack of movement, the lack of facial expressions,
the utter inability of others to comprehend what was going on in his little
head. The neurologist on call, the living room remade as an in-house
pediatric emergency room, the desperate search for any pharmaceutical that
would work, leading to a non-FDA-approved drug from France. Then the
discovery of Charlotte's Web, which eventually led to Kingsley's first dose
of the oil as a Realm of Caring patient in October 2013. And finally, the
now-famous results: seizure reduction, increased cognition, little gestures
and eye movements that his parents had never seen before.

But then the story changes. Kingsley's initial dose, the one that seemed to
work, was extremely high in CBD and very low in THC, says his mother,
Summer Forrest Larsen. According to test results provided by Denver-based
CannLabs, which are included with each batch of Charlotte's Web, the ratio
was 88 parts CBD to one part THC. Summer never saw that same breakdown in
later batches of the oil. CBD-to-THC ratios would range from 26 to 1 to 37
to 1 to 54 to 1. She didn't need to look at those numbers to see that
something about the product was changing: The color of the oil was shifting
from a dark, tar-like hue to a clear yellow.

Most important, the changes seemed to be impacting Kingsley's response to
the oil. His seizures were coming back, the inklings of cognition were
drifting away. Finally, after a dose of Charlotte's Web in the spring of
2014 that triggered what Summer describes as "seizure hell," they'd had
enough, and took Kingsley off Charlotte's Web. (Recently, they've started
giving their son oils made by a different Colorado marijuana grower.)

The Larsens aren't the only parents with questions about Charlotte's Web's
consistency. The issue has become a major point of discussion on New Home
New Hope, a private Facebook page set up for parents moving to Colorado to
get access to Charlotte's Web -- or "CW," as it's often referred to in such
groups.

"I have a question/concern about no detectable THC level in our most recent
batch of 100mg/g CW," writes one parent. "Since our daughter's previous
batches ranged from 20:1 to 30:1, I am at a loss as to how this material
can be distributed as CW!"

"All I know is [I] went from having my child do the best she has ever done
with regard to seizure control and cognition to the worst," writes another.
"I almost feel like this current CW is...making her worse instead of
helping her at all."

"This is no longer CW or what my child started on 1+ years ago," says a
third parent, who adds that she doesn't like the idea of trying to add THC
or other components to the oil to mimic its old makeup. After all, the
whole point of not distributing Charlotte's Web samples to parents was to
protect product consistency and minimize outside tampering -- and now, she
notes, "I'm being turned into a chemist."

Even the producers of Charlotte's Web have changed how they refer to it. In
a recent Q&A session with parents, representatives of Realm of Caring and
Stanley Brothers said that Charlotte's Web shouldn't be considered a
marijuana strain or even a plant, as it had been referred to in the past.
Instead, said Heather Jackson, "We call Charlotte's Web the product derived
from a breeding project from the Stanleys." And that product is no longer
called medical marijuana, but medical hemp.

The shift is due to Amendment 64, which not only legalized adult use of
recreational marijuana, but also okayed the cultivation of hemp in Colorado
for the first time in nearly six decades. That allowed the operation to
drastically scale up production of Charlotte's Web to meet demand without
investing in expensive greenhouses, says Joel Stanley. According to
Colorado Department of Agriculture rules, hemp is defined as cannabis
plants with no more than 0.3 percent THC -- and Charlotte's Web has always
tested below that number, according to Joel. That's why this summer they
were able to grow seventeen acres of Charlotte's Web in open fields outside
Wray with the state's approval; oil made from those plants is just now
starting to be distributed. "When hemp regulations came out, we saw a way
to shoot us into the future," Joel explains. "We went from a few thousand
plants under 20,000 to 30,000 square feet of growing space to nearly a
million square feet and 50,000 plants."

But would the original Charlotte's Web have qualified as hemp? Of thirteen
CannLabs test results obtained by Westword for batches of Charlotte's Web
grown in the Stanley Brothers greenhouse and distributed to parents over
the past year, seven indicated that the THC was greater than 0.3 percent --
meaning above the hemp cutoff. Those tests have some people wondering
whether Stanley Brothers had been tweaking the makeup of the plant, making
it more hemp-like, before planting it in Wray. "I feel like they have done
a bait-and-switch on the original parents," Summer Larsen says. "It is not
the same oil."

Nothing has changed about Charlotte's Web, insists Graham Carlson, director
of operations at Stanley Brothers Social Enterprises. Carlson, who worked
as a microbiologist for the natural-products company ChromaDex before being
hired by the Stanleys in May, says he thinks the shifting CBD-to-THC ratios
and the THC numbers that came in over 0.3 percent might be due to testing
irregularities. "Right now, with a lot of medical marijuana testing labs,
there has been such a surge in volume in the number of samples they are
testing, we have noticed a reduction in quality of those tests," he adds.
That's why Stanley Brothers is switching to a new testing lab -- one
Carlson declines to name but notes is associated with Colorado State
University and focuses exclusively on hemp.

William Livermore, spokesman for CannLabs, which has long been testing
Charlotte's Web, isn't aware of any testing inconsistencies. "Our equipment
is calibrated and constantly being calibrated in excess of the standards of
the Colorado Enforcement Division so we are assured that our test results
are what they are," he says. "If there are variances, they could be in the
sample."

Carlson concedes that this might be the case: "It's like wine. The plant is
going to vary." On average, he says, the CBD-to-THC ratio in Charlotte's
Web is 30 to 1, but that could fluctuate some -- just as variances are
allowed in the makeup of pharmaceuticals. Could such natural variances in
Charlotte's Web impact a patient's reaction to it? "Potentially," Carlson
replies. "Every biological organism responds differently to chemical
inputs."

And will some patients not respond at all? Paige Figi, Heather Jackson and
others at Realm of Caring are always quick to point out that Charlotte's
Web doesn't work for every patient. Still, the success rates they report
are impressive: Case reviews of two doctors working with Realm of Caring
members indicate that 73.5 percent of epileptic patients who've been on the
program for at least three months are seeing at least a 50 percent
reduction in seizures -- and 13.5 percent are living completely
seizure-free.

According to Kevin Chapman at Children's Hospital Colorado, however, a
review of 75 or so pediatric epilepsy patients who were on some kind of
cannabis oil between September 2013 and August 2014 came up with a very
different success rate. "Our study would suggest, for the most part, that a
third of patients and families did report an improvement in seizures of at
least 50 percent," he says. "That means we still have a way to go to get
better therapies for these kids."

Jackson points out that Chapman and his colleagues are likely to see only
those kids who aren't responding well to cannabis oil. "When people are
doing well, they don't go to the hospital," she says.

Catherine Jacobson, director of research investment for the Epilepsy
Foundation, says there's a problem with the success rates reported by both
Realm of Caring and Children's Hospital Colorado. "These reports do not
qualify as trial data," she notes. "They are reports based on parental
recall, and certainly not observational studies or trials." The lack of any
real scientific research into Charlotte's Web and other, similar products
puts parents in a difficult spot, adds Jacobson, whose son has severe
epilepsy and hasn't seen much improvement from Charlotte's Web or other
high-CBD treatments. "Nobody has stepped up to gather meaningful data that
can be used to inform treatment," she says. "The only way to solve this
issue is to run a randomized, placebo-controlled clinical trial using the
same standards as any other clinical trial." Through the Epilepsy
Foundation, she's hoping to raise money to do so.

Realm of Caring agrees that a valid clinical trial is necessary; it's
working to find funding for its own study. "Until we raise the research
bar," says Heather Jackson, "these will all just be stories."

*Continue to keep reading about Charlotte's Web, one of Colorado's biggest
cannabis success stories.*

[image: Josh Stanley has struck out on his own.]
Josh Stanley has struck out on his own.

Standing on his back porch in unlaced, muddy work boots, Jason Cranford
takes a drag from his cigarette and gazes out at the six acres of farmland
he owns in Longmont -- six acres that, if all goes as planned, will be
filled next summer with thousands of high-CBD, low-THC cannabis plants that
will qualify as hemp. Between tending to the marijuana crop in his South
Park greenhouse, working with lawmakers in Georgia on a proposed medical
marijuana bill and meeting with government officials in Jamaica about
starting a grow there, Cranford's been busy. Today he's already worked
around the farm, met with investors in his marijuana businesses -- Cranford
owns Rifle Mountain Dispensary and co-founded Cranfords Cigarettes, a
machine-rolled-cannabis-cigarette company -- and answered dozens of e-mails
and Facebook messages from parents with various medical dosing questions.

Along with his for-profit businesses, Cranford runs the Flowering H.O.P.E.
Foundation, a nonprofit organization that, with 120 patients and counting,
is the second-largest operation providing high-CBD oils to children in
Colorado. In the wake of the CNN documentary on Charlotte's Web, Cranford
posted the test results on CannLabs' website of one of the high-CBD
marijuana strains he'd been cultivating for years in his South Park
greenhouse; it didn't take long for parents, many of whom were on Realm of
Caring's waiting list, to start reaching out. Scruffy and laconic, Cranford
comes across as the opposite of the straitlaced, charismatic Stanley
brothers. But he had the same reaction they did when he saw what his plants
could do for some children. "I was skeptical at first," he says. "But when
they started trying it, we were just amazed at how well it worked." He
named one of his high-CBD strains Haleigh's Hope, after a four-year-old
girl with cerebral palsy and severe epilepsy who went from hundreds of
seizures a day to just a handful while taking his oil.

To serve his patients, Cranford operates as a basic caregiver, having a few
employees help him make the oils in a plastic-draped extraction lab he's
set up in his garage; patients stop by the house to pick up new batches. He
decided it was too complicated, too expensive for patients, to sell his
high-CBD oils out of his dispensary, as the Stanley Brothers do; he didn't
like the idea of families having to drive through the mountains to Rifle to
get their product.

For a while, Cranford would ask parents to donate whatever they could
afford in exchange for oil; lately, however, he's established a pricing
scale similar to that of Realm of Caring, with oils starting at five cents
a milligram. But there are other differences between the operations:
Cranford, who uses light-deprivation systems in his greenhouses to produce
four crop cycles a year, doesn't have a list; the longest anyone has had to
wait for their first batch of oil has been six weeks. In addition, says
Cranford, "I give out clones to parents."

Cranford says that CannLabs, which also tests his oils, introduced him to
Paige Figi and Joel Stanley via e-mail last January, and Cranford offered
to supply oils to patients on Realm of Caring's wait list. He says they
never responded. No one at Realm of Caring or Stanley Brothers remembers
such an offer; while they do list other common high-CBD strains in their
new-patients' starter guide, Realm of Caring doesn't recommend anyone
else's services to those waiting for Charlotte's Web. "I am looking,
looking, looking, but I have not seen another organization step up with
something I would give to my daughter," says Paige Figi. "I think these
operations need to have a commercial license. The product has to be
lab-tested, consistent, and there has to be medical support."

In a lengthy April interview in *Ladybud* magazine, an online women's
publication largely focused on marijuana issues, Cranford criticized Realm
of Caring for its wait list, suggesting that, based on his math, "they're
making $10,800 off of each patient before they ever even give them any
medicine."

Although Realm of Caring and the Flowering H.O.P.E. Foundation are the
largest suppliers of high-CBD oils to children, other Colorado marijuana
growers and caregivers are cultivating CBD-rich plants; some of these
individuals are even quietly providing high-CBD oils to families in other
states. And now bigger names are trying to get in on the action with their
own alternatives to Charlotte's Web and Haleigh's Hope.

Greenwerkz, a Denver-based dispensary chain, is working on a large-scale
indoor cultivation of R4, a high-CBD strain that master grower Kelly Roller
says he's been developing since 2009 -- and that he believes is the origin
of Charlotte's Web. Back in 2011, he remembers, the Stanley brothers asked
him for help with one of their patients, and he provided them with trim
from R4 plants, which he had been calling "Hippies' Disappointment." "We
believe they took a seed and popped it, and that became Charlotte's Web,"
says Roller, adding that he just wants to set the record straight.

The record doesn't need correcting, counters Joel Stanley. "Charlotte's Web
is not R4," he says. "We had been breeding CBD for a year and a half before
we'd ever heard of R4." Plus, he adds, "having seen R4 grown and tested, it
doesn't have the same CBD/THC profile."

Charlotte's Web is also facing competition from outside Colorado, including
from companies like Medical Marijuana Inc. that sell high-CBD oils made
from industrial hemp produced outside the country. These companies argue
that their oils are exempt from cannabis restrictions because they're sold
as food or nutritional supplements -- which also means the companies can't
make claims regarding their medical use. "They fooled the whole country
into thinking that this is medical marijuana and they need to move to
Colorado to get access to this," says Medical Marijuana Inc. spokesman
Andrew Hard of the people behind Charlotte's Web. Even so, Hard says that
so far this year, his company has sold more than $30 million worth of
high-CBD products like Real Scientific Hemp Oil Gold, its top-of-the-line
product, which retails for $499 for a ten-gram tube.

But in October, Project CBD, a nonprofit educational organization,
published an investigative report accusing Medical Marijuana Inc. and its
subsidiaries of shady business dealings and questionable safety standards
that had made some users of its products violently ill. "If there is
anything that comes out of this report, I hope it's that sensible
regulations for therapeutic cannabis will be implemented in accordance with
rigorous standards that apply to other medicinal herbs," says Project CBD
director Martin Lee. Something else has already come out of the report:
Medical Marijuana Inc. is suing several individuals and organizations that
contributed to the investigation for $100 million in damages. The
defendants include Cranford, who was briefly tapped by Medical Marijuana
Inc. as a scientific advisor before he resigned and began raising questions
about its operation, and CannLabs, which ran tests on samples of Medical
Marijuana Inc. products provided by Cranford.

There's another competitor hoping to satisfy that market demand: GW
Pharmaceuticals, a British company, is conducting an FDA-approved trial of
Epidiolex, a high-CBD drug made from marijuana. "We are leading the path
forward toward developing a prescription, pure plant-derived cannabidiol
medicine, which is what we believe physicians and patients desire," says
company spokesman Stephen Schultz. If GW is successful, there could soon be
a pharmaceutical equivalent of Charlotte's Web.

Adding to the confusion is the fact that Stanley Brothers no longer
includes all of the Stanley brothers. Late last year, Josh Stanley, the
oldest and most visible of the six brothers, the one featured in the CNN
documentary and a popular TEDx talk about Charlotte's Web, left to start
Strains of Hope, a nonprofit medical cannabis organization, and GenCanna
Global Enterprises, a for-profit company marketing "cannabinoid replacement
therapy" through nutraceuticals made from hemp grown in California,
Kentucky and elsewhere. "I am my brothers' biggest cheerleader; I just had
a different vision," says Josh. "Colorado's regulations are just too
restrictive. It's fantastic to prove the efficacy; it's quite another to
satisfy market demand that gets it to people who really need it."

Competing companies and nonprofits, claims and counterclaims: It's becoming
increasingly complicated for parents to figure out the best way to get
high-CBD oil for their children. On October 25, Summer Forrest Larsen, the
Denver mother who took her son Kingsley off Charlotte's Web because of
consistency concerns, posted a message on New Home New Hope, the private
Facebook page set up by parents for those moving to Colorado for
Charlotte's Web: "There are other CBD oils available for those who aren't
finding what they used to have with CW. I know it is frustrating, but
please don't be afraid to branch out and try other CBD oils provided by
multiple growers in this state." An hour later, she says, she was banned
from the Facebook group.

"This group thrives on love and support, and we will do what it takes to
maintain an environment conducive to such," says Holli Brown, one of the
administrators for New Home New Hope. "Sometimes that means removing the
source of the problems from our groups rather than making hundreds of
others deal with the negativity."

But Summer says she wasn't being negative, she was just trying to support
other parents. "It's all about helping children, right?" she asks.

*Continue to keep reading about Charlotte's Web, one of Colorado's biggest
cannabis success stories.*

[image: Matt and Paige Figi told their story to CNN's Sanjay Gupta.]
Matt and Paige Figi told their story to CNN's Sanjay Gupta.

On August 7, Sebastien Cotte and his wife, Annett, got in their Nissan SUV
with their three-year-old son, Jagger, and began what Sebastien now calls
"the trip from hell."

A year after he was born, Jagger was diagnosed with Leigh's disease, an
extremely rare mitochondrial disorder that left him plagued by seizures,
wracked with painful muscle spasms, and given a prognosis of just a few
years to live. By this summer, Jagger was building up a tolerance to the
experimental drug that had helped to keep the pain at bay, so his parents
decided it was time to move from Stone Mountain, Georgia, to Colorado to
get him cannabis oil -- even though some of Jagger's nurses warned that he
might not survive the trip.

Jagger survived, but the trip wasn't easy. His parents could only drive a
few hours before the oxygen concentrator device that was keeping him alive
in the back seat would run out of battery power, and they were constantly
lugging bulky machinery from their car to hotel rooms. Finally, after six
days on the road, they made it to Denver and immediately began the medical
marijuana card approval process. Now Jagger is on oils made by the
Flowering H.O.P.E. Foundation, with encouraging results: His seizures are
greatly reduced, his pain seems manageable. But eventually, says Sebastien,
the three will be making another trip from hell back to Georgia: "My wife
doesn't want Jagger to die here."

Sebastien Cotte is working with other parents back in Georgia who are
lobbying for the legalization of medical marijuana. And as he sees it, that
puts him at odds with Realm of Caring and Paige Figi, whose story helped
inspire him to move to Colorado in the first place. While speaking in
Atlanta this summer at a legislative hearing on a medical marijuana bill,
Paige told lawmakers that "I am assured the political climate in Georgia is
not ready" for full medical marijuana. Instead, she recommended the
legislature legalize only low-THC, high-CBD marijuana strains like
Charlotte's Web.

This didn't make sense to Sebastien. Earlier this year, Georgia legislators
had nearly legalized medical marijuana before that effort failed; polls
suggested that 54 percent of Georgia voters support *full* marijuana
legalization. "We were working so hard to try to get a comprehensive bill
and full-spectrum cannabis so more patients can actually benefit from it,
and here she was, making unfounded statements," he says. And he now knows
firsthand the importance of allowing all kinds of medical marijuana: Jagger
consumes oils that feature not just CBD, but also THC, since CBD alone
wouldn't do much for his muscle pain.

Georgia isn't the only place where Paige has been advocating for the
legalization of high-CBD, low-THC cannabis. Over much of the past year, as
Realm of Caring's spokeswoman, she's been speaking with lawmakers all over
the country; her story has helped inspire a wave of new medical marijuana
laws. But of the fourteen states she's worked in that have passed such
laws, eleven gave the okay to only high-CBD, low-THC strains. And in July,
Realm of Caring celebrated the introduction of the "Charlotte's Web Medical
Hemp Act of 2014," a federal bill that would exclude industrial hemp and
CBD from the definition of marijuana, thereby allowing Charlotte's Web and
similar strains to be sold nationwide. "It's a huge day, we're celebrating,
we're very excited," Paige told the Huffington Post at the time.

But even the man who helped launch the movement thinks that proposal is too
limited. "It isn't one-size-fits-all," says Jason David, the California
father who inspired Paige to seek out marijuana for Charlotte. "CBD isn't
the only medicine that helps, and it doesn't always work. The fight for
cannabis legalization has been for whole plant forever, and now a company
has made the cannabis half-good, half-evil for their profits."

Paige says she's in favor of full medical marijuana legalization; she just
believes that in many of the places she's been lobbying, high-CBD, low-THC
legislation has to be the first step. "Most of the states I've been to,
full medical marijuana is never an option," she says. "When I speak to
government boards and committees, they say they will never sign that into
law.... I get the absolute most I can get, and the absolute most
[lawmakers] are comfortable with."

Dana Ulrich has been lobbying for the legalization of medical marijuana in
Pennsylvania to help patients like her seven-year-old daughter, Lorelei,
who has intractable epilepsy. Last November, Paige Figi and Josh Stanley,
who was then still working with his brothers, appeared at a rally at the
state capitol in Harrisburg, but at a planning meeting after the event,
Ulrich says they discouraged parents from fighting for full medical
marijuana. "They told us, 'This is what we do. We go to states, we tell
them you need to do CBD-only, and if you don't, it will kill your bill,'"
says Dana. (Josh says he doesn't remember saying such a thing -- and doubts
he did, since he's now adamantly against high-CBD, low-THC legislation.
"High CBD is not the answer for everybody," he says. "There are over 100
compounds in the plant, and they all need to be studied. It's a bad play.")

Dana and her colleagues decided to push for full legalization anyway; she
believes that's partly the reason that Paige failed to show at a
legislative hearing she was scheduled to attend this past June. (She also
thinks Paige was unhappy when she learned that Cranford, of the Flowering
H.O.P.E Foundation, would testify as well.) Paige denies that; she says
that taking care of Charlotte in addition to her Realm of Caring schedule
doesn't allow her to make every meeting she's invited to. "If I bail on a
state, it's because I really can't be there," she says.

Pennsylvania's medical marijuana bill died last month. Still, Dana Ulrich
isn't willing to settle for a half-measure; she's going to keep fighting
for full medical marijuana. "Even if CBD-only works for me, why is my kid
more important than a veteran with PTSD or an adult with cancer? Why does
my kid take precedence over anyone else?" she asks. "I can't lay my head on
the pillow and sleep soundly knowing we are leaving everyone else behind."

*Continue to keep reading about Charlotte's Web, one of Colorado's biggest
cannabis success stories.*

[image: The Stanley brothers' facility.]
The Stanley brothers' facility.
america.aljazeera.com

None of the eleven states that have passed bills legalizing only high-CBD,
low-THC medical marijuana have finalized their regulations. And in
September, it looked like they might not need to in order to help potential
patients. In an e-mail sent out to parents on its wait list, Realm of
Caring announced that it would soon start shipping the Charlotte's Web hemp
it had grown near Wray to all fifty states. The 2014 Federal Farm Bill had
legalized industrial-hemp cultivation for academic purposes, so as long as
Charlotte's Web recipients around the country agreed to participate in a
research project, everyone would apparently be legally protected. It
suddenly seemed like all of the state-by-state lobbying battles would not
be necessary, that families looking for high-CBD oils would no longer need
to leave their lives behind and move to Colorado.

But a month later, Realm of Caring sent out another e-mail: At the urging
of its legal counsel, the operation was putting its national distribution
plans on hold indefinitely.

"That was devastating," Paige Figi says of the legal advice. "It was the
one time we have had to rescind something we have promised."

Pennsylvania's Haley Barrett had already traveled to Colorado so her
two-year-old son, Monroe, who has Dravet syndrome, could meet with the
University of Colorado School of Medicine professor running one of the
research projects when she got the news the program had been scuttled. "I
do believe they were trying really hard to get this to the kids," says
Barrett of Realm of Caring. "But I think they were trying to go above the
law, almost. It just doesn't make sense. You'd think they would have looked
into it fully before contacting the parents about it."

The people behind Charlotte's Web are pushing on. Instead of getting
shipped around the country, the seventeen acres of hemp grown this summer
will instead go to families waiting for Charlotte's Web in Colorado, says
Joel Stanley -- which means that in the coming months, Stanley Brothers
Social Enterprises could eliminate the in-state wait list entirely.

What's more, the company is close to establishing a significantly larger
hemp grow in Uruguay; once that's up and running, Stanley Brothers plans to
distribute the resulting oil across the United States, much in the way that
Medical Marijuana Inc. and other hemp-oil companies distribute their
products. And Carlson, director of operations for Stanley Brothers, is
putting the finishing touches on a new home base for Stanley Brothers
Genetics, in a 10,000-square-foot former semiconductor-fabrication lab in
Boulder. There he will use a process called fractionation to ensure that
every future batch of Charlotte's Web contains the exact same ratio of CBD
to THC.

These efforts should help the company allay any concerns about Charlotte's
Web's availability and consistency. But in the process, could the very
things that made it so special -- the personal touch of its early
advocates, the camaraderie and collaboration of the first families it
touched -- be lost?

"It worries me, and it worries Heather and Paige," admits Joel Stanley. "At
the end of the day, the Stanley brothers aren't important and Paige and
Heather aren't important. What's important is the way Realm of Caring
grows, how this community has grown. We have seen the birth of an amazing
community here that most people cannot believe. It is our hope to grow that
community and not sacrifice it for size."

To that end, Joel says he hopes to add a new element to Realm of Caring's
website: a remembrance page for the eleven patients that couldn't heal
completely, the ones they have lost along the way.

Among those listed will be Eric Prine.

On Mon, Mar 2, 2015 at 8:07 AM, Tom Hansen <thansen at moscow.com> wrote:

> Courtesy of today's (March 2, 2015) Spokesman-Review.
>
> --------------------------------------
> Young girl's story could prompt lawmakers to relent on cannabis extract
>
> By Betsy Z. Russell
>
> Proponents of cannabidiol oil, a non-psychotropic extract of marijuana,
> say it reduces the amount and length of seizures in children with a rare
> form of epilepsy called Dravet Syndrome. The parents of a 10-year-old Boise
> girl who suffers from the syndrome have been pushing for two years for use
> of the oil to be allowed in Idaho, the AP reports, but Idaho lawmakers in
> 2013 passed a resolution vowing never to legalize marijuana for any
> purpose. Alexis Carey began having seizures when she was two months old;
> now 10, she requires constant supervision, night and day. "Like any parent,
> you never give up hope that you can get complete seizure control," said her
> mother, Clare Carey. "Children die from Dravet by any one of the seizures.
> Alexis could have a seizure that may not stop, we never really know."
>
> Now, the family has some hope: Legislation to allow the use of the extract
> for treatment of the disease has been introduced in the Senate State
> Affairs Committee, and its co-sponsors are Senate State Affairs Chairman
> Curt McKenzie, R-Nampa, and House State Affairs Chairman Tom Loertscher,
> R-Iona. Twelve states have legalized the oil while still banning medical
> marijuana. The bill is awaiting a committee hearing; AP reporter Kimberlee
> Kruesi has a full report here
> <http://media.spokesman.com/documents/2015/03/ap-oil-sty-3-2-15.pdf>.
> --------------------------------------
>
> Legalize it!  Regulate it!  Tax it!
>
> [image: image1.jpeg]
>
> Seeya 'round town, Moscow, because . . .
>
> "Moscow Cares" (the most fun you can have with your pants on)
> http://www.MoscowCares.com <http://www.moscowcares.com/>
>
> Tom Hansen
> Moscow, Idaho
>
>
> =======================================================
>  List services made available by First Step Internet,
>  serving the communities of the Palouse since 1994.
>                http://www.fsr.net
>           mailto:Vision2020 at moscow.com
> =======================================================
>
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