Pubdate: Sun, 17 Aug 2014
Source: Tulsa World (OK)
Copyright: 2014 World Publishing Co.
Contact:  http://www.tulsaworld.com/
Details: http://www.mapinc.org/media/463
Author: Ziva Branstetter
Page: A1

PARENTS HOPE STATE APPROVES CBD

The Marijuana Extract May Help Children With Dravet Syndrome.

With wavy brown hair and an impish grin, 6-year-old Morgan Adler had
all the stylists vying for his attention during a recent visit to his
mom's beauty salon.

Morgan decided instead to strike up a quiet conversation with an
elderly woman as her hair color processed, gently nudging his way into
the seat next to her.

Taylor Adler said watching her son's kindness in that moment, and many
others, melted her heart.

During the last six years as Adler and her husband, Brian, have
watched Morgan grow, they've had more than their share of painful
moments too. The boy began having seizures soon after he was born and
for years, doctors were stumped about what was causing them.

Morgan was rushed by Life Flight to the hospital several times after
seizures. The family eventually had to move from their new Owasso home
to a home near Saint Francis Hospital.

Last year, Morgan was diagnosed with Dravet syndrome, a potentially
fatal seizure disorder that strikes about 1 in 40,000 children.

Treated with strong anti-seizure medications, children with Dravet are
often developmentally delayed. Some lose the ability to talk and to
walk.

Adler thought the medications, while necessary for the time being,
weren't the right solution for Morgan. They made him dizzy, off
balance and unable to focus his thoughts or remember words.

Then she read about a drug that had miraculous results for some
children with Dravet and similar disorders: cannabidiol.

Because the drug, called CBD, is extracted from marijuana, it is
illegal in Oklahoma and other states that outlaw medical marijuana. To
obtain CBD, Adler would need to consider a drastic step: moving her
family out of state from the city she loves and leaving a thriving
business behind.

Adler and her husband own Sterling Salon, housed in a sleek, modern
building they built on a vacant lot north of 18th Street on Boston
Avenue.

Adler's hopes were dashed earlier this year when state lawmakers
failed to consider a bill that would have legalized medical marijuana.
Parents of children with Dravet were among those rallying at the
Capitol in support of the bill.

Adler, who also has a 2-year-old son, Kyle, said even simple family
outings to a park are different for children with Dravet.

"Every single time we go anywhere we are worried about a seizure," she
said. "We live in constant fear."

Morgan's school would not allow him to move forward this year due to
his delayed development so Adler plans to home school her son. The
family has checked into moving to Colorado or California to obtain CBD
for Morgan's treatment.

The drug is low in THC, the psychoactive component of marijuana, and
is given orally in drops.

CBD is also known as Charlotte's Web, taking its name from a famed
children's book but also a 6-year-old Colorado girl, Charlotte Figi.
Charlotte's seizures dropped from 300 per week to three per month
after treatment began, according to numerous news accounts.

"We definitely want to use Charlotte's Web, obviously that's our
plan," Adler said. "But I think from my perspective, I am a
contributing business owner in Tulsa. I love Tulsa and I don't want to
leave. I don't want to have to move."

Families from several states across the country, including a handful
of Oklahomans, have moved to Colorado to obtain CBD.

On Wednesday, an announcement by Gov. Mary Fallin brought hope for
Adler and others whose children have Dravet, severe epilepsy and
diseases that CBD can treat.

Fallin said she will ask state lawmakers to support a bill legalizing
CBD on a medically supervised, trial-only basis. Fallin stressed she
did not support legalizing recreational or "broadly-defined medicinal
marijuana use."

"I am very interested in allowing limited, heavily supervised use of
non-intoxicating CBD to be delivered on a trial basis to sick children
in Oklahoma," Fallin said.

Coincidentally, supporters of an initiative petition that would
legalize all forms of medical marijuana announced Friday their effort
had fallen short. The group calling itself Oklahomans for Health
turned in signatures it had been collecting to get the issue on a
November ballot.

The group needed to gather 155,126 signatures through Saturday but a
spokesman said he doubted the organization would reach that number.
Efforts would continue to get the issue on a future ballot, the group
said.

The legislative study on CBD will be led by Rep. Jon Echols,
R-Oklahoma City. Echols said his interest in the issue is inspired by
his 10-year-old niece, who lives in Norman and has been diagnosed with
Dravet syndrome.

Nationwide, 10 states have legalized CBD for medical treatment,
including Missouri, according to the website ProCon.org, a non-profit
devoted to discussion of public policy issues. Meanwhile, 23 states
have legalized general medical use of marijuana and two have legalized
recreational use, according to the website.

Among those lobbying for approval of medical marijuana is Josh
Stanley. One of six brothers born in Shawnee, Stanley moved with his
family to Colorado when he was 18 and later opened the second medical
marijuana dispensary in the state.

The Stanley brothers worked for years to create the CBD plants used to
make Charlotte's Web, dubbing them "hippie's disappointment" for their
lack of THC.

The brothers now operate a nonprofit, Realm of Caring, to help
patients who cannot afford the medication. Josh Stanley operates
Strains of Hope, a nonprofit dedicated to medical marijuana research
and advocacy in the United States and abroad.

The Stanley brothers have been featured in a CNN documentary and
episodes of the National Geographic show "American Weed."

In an email to the Tulsa World, Josh Stanley said Fallin's
announcement "is a major victory for the children in Oklahoma who
desperately need this natural treatment."

"Oklahoma is on its way to providing safe access to a proven miracle
of nature and I applaud the governor's endorsement," he said.

It is unclear how a medical trial of CBD in Oklahoma would work, who
would pay for it and whether any doctors in the state are prepared to
take part.

Adler said she is watching the issue closely and hopes the state
legalizes CBD to give Morgan and other children here the option to use
it.

"It's our only shot at him having somewhat a normal life," she
said.

"He will never be on par with his peers because of the damage that has
been done by these medications but I want him to be able to hold a
thought for longer than two seconds. I want to meet my son. I want to
have a conversation with my son."
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MAP posted-by: Matt