Let’s Talk About Epidiolex

Today was a big day in the world of cannabis. The first ever plant-based pharmaceutical drug made from cannabis rich in cannabidiol (CBD), Epidiolex, was scheduled by the DEA. You’d think it would be scheduled as a II or III because “marijuana” is schedule I (no medical value with high potential for abuse/federally illegal). Not the case. Epidiolex was scheduled as level V the lowest possible schedule – least restrictive – which legitimizes the proven health benefits of CBD and its low potential for abuse. To give you a comparison, Epidiolex is in the same category as cough syrup with small amounts of codeine and yes, it requires a prescription. The FDA approved the drug in June for two rare and severe forms of epilepsy, Lennox Gastaut Syndrome (LGS) and Dravet Syndrome. It is possible that doctors will write prescriptions “off-label” for other epilepsy conditions that can benefit from CBD.

There is a lot of confusion surrounding this topic so we wanted to clarify a few things for you. As we learn more we will update this article.  First, this doesn’t change anything for those of you who are using whole plant botanical extracts made from industrial hemp. The molecule CBD did not get scheduled today, only the drug Epidiolex. This motion by the DEA does allow for future FDA approved cannabis-derived pharmaceuticals as long as the THC limit is less than 0.1%.  CBD did not get patented, you can’t patent a plant. CBD is not illegal if you are following your state laws, plus we have the added protection from the Farm Bill and Omnibus Bill from federal prosecution. Accessing CBD is a personal decision and you should make the best decisions to improve the quality of life for you or your loved one.

Currently, there are synthetic (man-made) forms of cannabis pharmaceuticals Cesamet and Marinol on the market which are scheduled as II and III and are prescribed to chemotherapy patients with vomiting and severe nausea. These drugs are THC based, not high in CBD. If you live in a medical or recreational cannabis state you can access THC products under state laws, although it is still federally illegal with “marijuana” as schedule I.

Having Epidiolex on the market is a move in the right direction because the US government clearly recognizes the medicinal benefits of cannabis. FDA approval also means insurance companies should cover the cost because it is expected to be pretty pricey. If they don’t (and you may need to fight for coverage)this may turn into an unaffordable option.

Fun Fact:
Did you know cannabis was available as a pharmaceutical drug in the US until 1947? Then reefer madness happened and the public was largely misinformed. We are thrilled cannabis is getting her positive reputation back!

Did you know:
We are conducting the largest observational cannabis study in the US in collaboration with Johns Hopkins University. In our epilepsy population, the average dose of CBD is 2mg/kg (the range is 7mg CBD-600mg per day). The starting dose of Epidiolex is 5mg/kg. Their studies titrated participants up to 20mg/kg or higher.  It is really important to know and discuss this huge variance with your doctor.

If you found this article interesting, please share it with your friends and comment below!

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Mugs of RoC- Heather, CEO & Co-Founder

With a look of defiance, the precocious fair-skinned, nine-month-old finagled her way out of her diaper, “No more!” she commanded. As she stretched out her little arm through the crib railings handing the wrinkled diaper over to her mother in her self-proclaimed declaration of potty readiness. In this radical act her mother understood she wasn’t raising an ordinary little girl, and the young girl didn’t know that many years later, her second son would rely on her renegade spirit to turn to cannabis to keep him alive in a climate devoid of options.

She could have stopped there, but her even-handed, egalitarian nature felt indignant that a zip code could determine whether people live or die, and what health options might be available to them. Thus, Heather Jackson, Co-Founder, and CEO of Realm of Caring, begun to change the world.

Today she sits across from me in her large corner office in Colorado Springs holding in her right hand – not a diaper – but a large hand-thrown mug with a greenish, bluish glaze with a small shell at the top of the handle which provides a resting place for her thumb. In the front, it has a circle with a mushroom-shaped home and in the middle, it says, “Earth Ship”. Somehow, I don’t picture her living, off the grid in the plains of New Mexico, but one thing I have learned about her is that she is not stereotypical in any way.

“I have a passion for yurts,” she says her face lighting up at the thought. “Big ones, small ones, how they are constructed, what they are made out of; I have researched everything there is to know about Yurts.” Dumbfounded, I think to myself, well, she just may live off the grid in an Earthship someday after all.

The underlying theme, however, is that she is a researcher, a documenter and unusually fair – able to see all sides of an equation. Her team often refers to her as fearless – “Our fearless leader” we’ve coined her. Is she truly fearless? Of course not, I presume; who is? She has a productive ability to channel her fear into research, as there is power in knowledge. I also admire that “fear” fuels her, rather than blocks her, and onward she goes, rarely looking back, with us at her heels trying to keep pace.

I now turn my attention back to her as her recently exposed silver curls are back-lit from her westward facing window and she sits expectantly, broad-smiled and eyes twinkling.

My attention is redirected to the lofty mug she cradles in-between both hands with much affection.

Tell me about it, I say.

Heather is amongst many things, a great storyteller. When she speaks, you are transported into her world as it is hard NOT to feel her child-like enthusiasm in each word. Today is no exception as she inches forward in her seat as she excitedly recounts a visit to a dwelling made of mud-covered tires, shaped like a mushroom (she gestured grandly with her hands and I can see the curvature of the structure against the arid backdrop of the desert), with her husband in Taos, New Mexico. The adventure, a first for them, warranted a keepsake – the mug – which explains why she holds it so lovingly in her hands.

Tell me something about yourself that nobody knows – besides your intrigue in yurts, that is.

“I am a closet introvert,” she discloses quite frankly.

The key word in this statement is clearly “CLOSET” as nothing about Heather is in any way, shape or form quiet, demure, timid, shy, wallflower-like or even remotely close! Reading my thoughts, she tilts her head down a bit and looks up slightly at me as if admitting to a secret, and in a way of an explanation, offers.

“What we do here is so public”, she admits, “and I am so transparent and candid with our story… I might be the person on Friday night that would say to a Saturday invitation, What time?… What should I bring?… And then.. have no intention on going,” she says blurting out in laughter. “Instead, I would be happily curled up on my couch. Isn’t that terrible?!” She looks at me shamefully.

I don’t find that terrible at all as there is even a name for it: Ambivert. Take this quiz to find out if you are one too.

What is the title of the current chapter in your life?
“Hustle and flow,” she says without thinking.

I love dichotomies, and that is a great one!

What age do you want to live to?
“Hmm.. until there is no potential left in me… Not sure how old that will be.”

What do you wish your brain was better at doing?
“Remembering names, I can remember the flecks of gold in somebody’s eyes, the location of their freckles on their face, but I can’t remember their names!”

Why do you like working at the Realm?
“Many people don’t know that I have worked since I was eleven; I used to have a paper route with the Gazette newspaper. For the first time, my passion and my profession are able to mesh. It doesn’t feel like work. I know that Zaki wouldn’t be here… and then he is. Unless you can really fathom that, wrap your heart, and wrap your mind around that, you may not understand. It’s how I make meaning of Zaki’s suffering and secondly, my family’s suffering for a decade.”

Heather moves on to mention a book by Viktor Frankl called Man’s Search for Meaning which basically states that unless you can assign meaning to your suffering you are not going to make it.

“RoC is how I have assigned meaning to our suffering.”

What is your particular gift that you bring to the world?
She pauses for a long time… then finally says, “Wow! What a great question, I think.” She pauses longer. “Love” she finally says, “there is nothing else.. an overflowing, bubbling-up, and abundant love for people who are.. umm.. hurting.. and, are lost… and, maybe, suffering. Love is truly a verb, love does, love DOES, it’s a working… it’s grinding your knuckles to the bone.”

“In church, people used to say, ‘I’ll pray for ya’ and I was like, ‘I’ll pray for ya, and here is a meal, and I’m going to keep doing things for you until you tell me to stop.’”

I smile because Heather manifests her love in a way that you can taste it, smell it and most certainly, feel it. 

Okay, one last question: What is one of your favorite song lyrics? And who is it by?
“Umm.. my favorite is a song by Ben Harper called With my own two hands.”

I can change the world with my own two hands

Make it a better place with my own two hands

Make it a kinder place, oh with my, oh with my own two hands

With my own, with my own two hands

With my own, with my own two hands

I could make peace on earth with my own two hands

And I could clean up the earth Lord with my own two hands

And I can reach out to You oh with my own two hands

With my own, with my own two hands

With my own, with my own two hands

I’m gonna make it a brighter place With my own

I’m gonna make it a safer place With my own

I’m gonna help the human race With my own, with my own two hands.

I look at her hands, the light fading behind her hair, the shine in her eyes and I think to myself, that is exactly what she is doing until “there is no potential left” in her.

Story of Inspiration – Meet Brandi

What does Realm of Caring mean to you?

Brandi:  I love the support and transparency. It’s a real deal community. I once called a listed practitioner and received [great] advice. I give every month 🙂

Tell us your story.

My name is Brandi, I am 46 years old, I am happily married with 3 sons and 2 grandsons. I am a personal trainer and nutrition coach. My fibromyalgia was triggered 8 years ago and came in the sudden onset of extreme fatigue and food allergies. We quickly determined I could no longer eat gluten, and then eventually soy. I have been a clean eater for over 10 years and in excellent physical shape so this was surprising. I now know that all my life I have had pain, the pain was my normal. It steadily increased to the point that I could barely move in the evenings.

I am not comfortable with prescription medications and last year I turned my self-study research to not only anti-inflammatory eating such as Keto or low-carb, higher healthy fats, but also to CBD. I developed anxiety in 2017. This was confusing since it mostly hit me when I was exhausted and trying to sleep or when I was very happy, like when I am hiking or with family.

CW Hemp was the third oil I tried. It was so confusing to find a quality oil that had been lab tested for not only impurities and toxins but also to prove that it contained CBD! Since I have chronic pain, I went straight for the highest strength, Everyday Advanced. I take one full dropper morning and night and occasionally a 35 mg capsule on a hard day. It is like magic! My anxiety is a rare occurrence now and the pain went from a daily 8/10 to most days being around a 2! I have tons of energy and I just feel great! I only strength train 3x a week for 45 min, I do EFT (Emotional Freedom Techniques/Tapping)  when needed, take walks with my clients and make sure I have time for peace and quiet and I am learning the acoustic guitar.

CW Hemp has changed my life. I went without it for 2 doses on accident and paid the price. Thank you for this product, your diligence and your caring for your fellow humans. This little oil allows me to get up every day at 4 am and train my clients til 3 pm on most days and still play with my grandsons!

I spent my 46th bday in the canyon on a 4-day intense hike.
I am a wife, mom, grandma, and coach.
All because of my clean diet of high fat, low-carb, moderate protein,
no grains, and other inflammatory foods,
and my CWhemp…
There is life with fibromyalgia!! 
Go live it!

Breaking Ground with the Stanley Brothers

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Listen to Breaking Ground with the Stanley Brothers debut episode with CNN’s Dr. Sanjay Gupta on Apple podcasts or wherever you listen. With the Stanley Brothers, Sanjay talks cannabis, the opioid crisis, why whole plant medicine matters, and a bold letter he wrote to Jeff Sessions and the Trump Administration. Listen here: bit.ly/BGwSB

#RaisetheRealm 24 HOURS Left to Raise $70K

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Ezra’s story is an incredible one, to say the least. This little boy has been through more than most adults will ever imagine in a lifetime. Ezra suffers from a variety of different conditions starting with seizures from a rare disorder called Lennox Gastaut Syndrome (LGS).  He also has dystonia, chronic pain, muscle spasms, chronically dislocated hips, osteopenia, bilateral amblyopia, scoliosis, possible metabolic disorder, gastroparesis, GERD, and multiple food allergies.

His seizure disorder began just a few days after birth and the subsequent conditions are the result of a variety of reactions over time. Ezra has undergone many surgeries including a feeding tube placement when he was only 2 years old.  During that time samples were taken from his liver, thigh muscle, and skin to test for a mitochondrial disorder.

Over the years, Ezra has been on more than 40 different prescription drugs ranging from seizure medications to heavy duty pain medications such as fentanyl patches, morphine, ketamine, muscle relaxers, and the list goes on.

For such a young, fragile body how could any of these pharmaceuticals be a healthy option?  His organs were failing from all of the harsh and toxic chemicals. His family knew it was time for a change.

Like many families in this Raise the Realm project, Ezra’s family moved to Colorado Springs in July 2013 from Boiling Springs, South Carolina to get safe and legal access to medical cannabis. Ezra’s mom says, “It was a no-brainer to try a natural healing route to allow his body to learn to function and thrive as God intended.”

Since 2013, Ezra has definitely been thriving from cannabis therapies!  He uses cannabis oil made with a combination of high THC and low CBD and this has given him a 90% reduction in seizures. Wait, there is more because Ezra’s list of benefits continues to grow each day. Cannabis also keeps his chronic pain manageable, is improving his bone density, healing his gut and minimizing his reflux, improving his vision, and reducing his muscle spasms by 98%.

This medicine is providing amazing mental clarity allowing Ezra to express himself with the use of an eye gaze communication device. He continues to learn several concepts which correlate to those of his peers. He has been able to develop a system of communication with his family members when a communication device is not available. Eye contact, smiling, and nonverbal communication are things that were not possible before cannabis therapy. When we asked Ezra’s mom, Marisa, does she have anything to add? “Cannabis is lifesaving medicine!” she exclaims.

Ezra uses a combination of THC and CBD oil, cannabis leaf juice, rosin, rescue vaping or nasal spray, and homemade topicals. It took a couple of years to find the perfect concoction, but Ezra is doing better than ever. He continues to grow and develop and his body is healing after the use of the pharmaceuticals. At one point he was in hospice care, and now he exudes radiant health!

Ezra is age 6, his older brother Noah age 9, Odin is 2 and baby girl Selah age 7 months.

RaisetheRealm #SiblingLove

EZRA 1

 

#RaisetheRealm 48 HOURS LEFT to $70K

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Jason is a retired Army Veteran who has been deployed overseas several times. He suffered a traumatic brain injury in a bombing and has since dealt with depression, anxiety, PTSD and severe pain.

VA doctors were quick to heavily sedate him with an army of pharmaceutical drugs including medications for pain, depression, and anxiety. Once these pills took effect, Jason started gaining a lot of weight, his anger increased, and his self-esteem drastically decreased. He then started getting angry at the man he had become. He felt trapped like he had no way out. He thought, “Why wasn’t I being supported in my recovery?”  

Jason called himself “a mess”.  He was forced to stay on the medications from the VA because if he didn’t refill them each month he was at risk of losing his VA benefits. On more than one occasion, suicidal thoughts plagued him. He had no interest in life. He didn’t see the point in living such a miserable existence.

Jason’s anger was out of control. He didn’t enjoy being around his child or his (ex) wife. He would tower over his toddler on purpose, instead of kneeling down to their eye level.  Jason yelled all of the time, his child was scared, and his wife at that time decided to walk away. He moved in with his brother-in-arms Noah at that point and completely isolated himself. He wouldn’t join Noah and his family for dinner, instead, he would eat alone upstairs in his room and sulk.

Jason turned to alcohol to deal with his emotions and combined with his pharmaceutical medications, it was a nasty cocktail.  This started his downward spiral all the way to rock bottom.

Jason has always known about cannabis but it was never an option for him while serving active duty. On top of that, he was frequently drug tested as active duty and as a Veteran because he was prescribed opiates.

Since using cannabis Jason can manage all of his symptoms and his mental health is stable. He was able to decrease his pharmaceutical medications and stop a lot of his medications altogether.

He points out that he is never “high”. He likes to medicate before heading to the gym for his morning workouts. Cannabis helps relieve his anxiety and decrease his pain so his workouts are more effective. He is more loveable, calm, and overall happy.  Jason now enjoys being with his children and is happily re-married.

#RaisetheRealm #SiblingLove

JASON 1

 

#RaisetheRealm 3 Days Left to $70K

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Addy was born with a significant brain malformation, causing seizures which are very difficult to control. When she was 5 months old, her seizures began and her epileptologist prescribed high doses of 3 different traditional antiepileptic medications.  During that time she was basically tranquilized, slept 22 out of 24 hours each day, suffered significant developmental regression, and stopped interacting with the world around her, including her loved ones.

Addy’s family carried her lifeless body around for months and were provided with palliative care counseling for families with a terminally ill child.

Addy’s family moved to Colorado from Maine on Mother’s Day 2014 to try safe and legal access to medical cannabis. Within five minutes of Addy’s first dose of CBD oil, she smiled.  Her parents knew without a doubt this treatment option would make a positive difference in her life. Over the next year, Addy was able to lower the dosage of pharmaceuticals and stop one medication altogether.

Today she laughs and smiles, hugs her family, eats food by mouth instead of a G-tube, and she feeds herself! She communicates with an augmentative device and now attends preschool.

Addy is 5 and her older brother Colin is 9  

#RaisetheRealm #SiblingLove

ADDY 1

#RaisetheRealm 4 Days Left to $70K


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Zaki has a very rare form of epilepsy called Doose syndrome. On top of many, many seizures, he has autism and his development has been delayed. He had 6 different types of seizures resulting in hundreds of thousands of seizures in his short life. Zaki was receiving hospice palliative care prior to cannabinoid therapy after his family tried 17 different pharmaceuticals, all of which failed him.

Even when you could not see Zaki’s seizures, his brain was still seizing at least every 10 seconds. How is a young brain to develop under these conditions?

After many struggles, Zaki started cannabinoid therapy in 2012. He is one of the reasons the Realm of Caring was founded. It took a few months to find the correct dose and then his seizures completely remitted. Some would call that a miracle, that is if there weren’t strong science to support CBD for seizures. Zaki was seizure free for almost 4 years. He was also able to come off of all pharmaceuticals. He is currently 99% seizure free.

Today, Zaki is a very lovable, kind, funny, and such a sweet boy. He is learning and developing more and more every day. Another inspirational story of cannabinoid therapy playing an instrumental part in bringing a child from hospice to health.

Zaki is age 14. His older brother Zarek is 20

#RaisetheRealm #SiblingLove

ZAKI 1 1


#RaisetheRealm 5 Days Left to $70K

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The Brown family are natives of Colorado and Tyler has suffered from debilitating seizures since the age of 7 from a rare form of intractable epilepsy know as Lennox Gastaut Syndrome, and he also has cerebral palsy. Tyler has been through more than most of us. He had a VNS (vagus nerve stimulator) implanted age at 9, emergency Corpus Callosotomy (for those of you who don’t know what that means the surgeon cuts the corpus callosum, which is the large fiber bundle that connects the two sides of the brain) to stop status seizures at age 10.  Tyler also had a G-tube placed at age 10 because eating/chewing would trigger seizures and aspiration.

Tyler’s family tried 12 different pharmaceutical medications to control his seizures. Every single one failed. After the Corpus Callosotomy, two medically-induced comas, and unresponsiveness to rescue medications, there were no other options. This is when Tyler’s mom learned about medical cannabis.

She says it was their “only hope”.  Since using cannabis, Tyler reduced the number of pharmaceutical medications, and he is much healthier overall. No more frequent pneumonia and other illnesses landing him in the hospital. Until recently, the cannabis therapies have kept Tyler’s seizures at baseline.

Now that Tyler is 16, he is dealing with puberty, which means an increase in hormones. This has caused an increase in seizures that not even cannabis can control. Tyler’s parents have tried CBD alone, THC alone, and a combination of both. THC was very useful for Tyler’s withdrawal symptoms when weaning his pharmaceuticals.

Tyler’s mom, Rita, would like to add “a huge thanks to Realm of Caring, the Stanley Brothers, Heather and Paige for all the support and knowledge while going through this process. We couldn’t have done it without them!”

#RaisetheRealm #SiblingLove


TYLER2