Day: March 6, 2019

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#RaisetheRealm 3 Days Left to $70K

[youtube https://www.youtube.com/watch?v=Uga1UTgso0w]

       

 
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

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Client Spotlight

Client Spotlight: Eli

Our son, Eli, was diagnosed with epilepsy at age 5. He is currently 15 years old. He has had fine motor and developmental delays since he was born. He never had complete seizure control. When he approached adolescence, his seizures increased dramatically to at least one per week. We had difficulty controlling his seizures and his behavior became more and more erratic with the increased anti- seizure medications and frequent seizures. After more testing, we found out last year that he has a genetic disorder, which was helpful to explain many of the symptoms he has had, but upsetting because we knew the seizures would not be outgrown.

We had been following the Charlotte Figi story, and once we were aware that the hemp oil was available to ship, we decided to try it for our son. He started taking the hemp oil supplement last July, and he has been seizure free ever since! We are so thankful! He still takes an anti- seizure medication and has a VNS, but he has now been seizure free for 10 months (longest since initially diagnosed)! He has been taking the Everyday supplement.

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#RaisetheRealm 24 HOURS Left to Raise $70K

[youtube https://www.youtube.com/watch?v=AIvCoyHIYOA]

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

 

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Breaking Ground with the Stanley Brothers

[youtube https://www.youtube.com/watch?v=3y1oF5QzGkg]

 

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

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We Were Recently Featured on Dateline

https://www.nbcnews.com/widget/video-embed/1237046851647

Technical issue with the audio. Link to full video here: https://bit.ly/2J5BHfk

“I saw life….” Watch as Former NFL Player, Eugene Monroe, describes his visit to Realm of Caring headquarters in Colorado Springs in his recent interview with Dateline NBC and their feature story “Growing Hope”. 

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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!

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Stories

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!

[youtube https://www.youtube.com/watch?v=IJNLGIr37Ls]

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#HopeMatters Meet Paula and Jordan

Episode 1 of 7

[youtube https://www.youtube.com/watch?v=XVLnq4-Dvqs]

Tune in tomorrow to hear the rest of Paula and Jordan’s story.

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In 2013 Paula and Jordan made a decision that would forever change their lives. Leaving their family and friends in Ohio and moving to Colorado was something they never imagined. All in hopes of a treatment to control Jordan’s seizures caused by a catastrophic form of epilepsy called Dravet Syndrome.

Her seizures started when she was 6 months old and by the time she was 18 Jordan had tried a dozen different pharmaceuticals and nothing controlled her seizures. On her worst day, she would have more than 70 grand mal seizures in a 12 hour period. Jordan’s mom, Paula, was desperate to find some relief for her struggling daughter. “She’s living, but she’s living in a zone,” says Paula. Jordan was placed on palliative (hospice) care and the doctors said there wasn’t anything else they could do.

Paula heard about Charlotte Figi’s story and her success with cannabis, specifically CBD products, for Dravet Syndrome. But Paula didn’t know anyone in Colorado and thought it was crazy to pack up their lives and leave her husband and their other daughter in Ohio.

That’s when Paula said she asked for divine assistance and their path was made clear. Within a couple of months, they moved to Colorado and got started with cannabinoid therapies right away. Since then, Jordan has been able to wean off two pharmaceutical medications, one highly addictive. Jordan has improved cognitive function and better quality of life.

Quality of life matters.  You can make a lasting impact for a family like Paula and Jordan’s by donating your time as a volunteer or by making a tax-deductible donation to the Realm of Caring.  With your support, the Realm of Caring can continue to offer programs and services to thousands of families around the world who are looking for guidance with cannabis therapies.

For just $1/month you can be a RoC Friend and support families like Paula and Jordan’s. Join us today.

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#GivingMatters Part 2 of Paula and Jordan’s Journey.

Episode 2 of 7

[youtube https://www.youtube.com/watch?v=n_Exo7qUbx4]

Tune in tomorrow to meet our next family, the Jergers, and hear their incredible story!

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We hope you feel inspired to make an impact after watching part two of Paula and Jordan’s story. Today, when Jordan has a seizure it is much less severe and overall her life has been positively affected by cannabinoid therapies. Paula is thrilled they made the move out West more than 5 years ago to try a plant-based, non-toxic option. “She’s never asked to go back home,” says Paula. They were one of the first families to relocate to Colorado before hundreds of families with medically fragile children migrated here. These families were known as “medical refugees” for leaving their home-states to try an option that wasn’t available to them at the time.

In the United States (at the end of 2018) we have 33 states plus Washington D.C. with medical cannabis laws, and 10 states which have legalized recreational cannabis, so hearing the term “medical refugee” is a little archaic, although it’s still happening as you’ll discover in episode three of this series tomorrow. It took families like Paula’s to completely uproot their lives and instigate major changes surrounding the medical cannabis stigma and legalities.

Without sacrifices like theirs, would more than half of our country have medical cannabis laws? These fearless families made a huge impact within their communities and beyond. Will you consider making an impact before the end of the year?

You’re probably asking, where does my donation go?

By donating to the Realm of Caring you are supporting education, research and grant programs. To date, donors have enabled Realm of Caring to grant more than $300,000 in financial assistance to families in need, and invest over $600,000 in first of its kind research with Universities like Johns Hopkins, Harvard, and the University of Pennsylvania studying the health outcomes of CBD and cannabis.

Becoming a RoC Friend for $1/month is the most impactful way to give. Become a Friend today.

One of greatest gifts you can give is your time! We would love if you’d consider volunteering for Realm of Caring! Read more about what volunteering looks like.

Tune in tomorrow to meet the Jerger family and learn why they fled the state of Indiana.

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Client Spotlight: Taylor

Taylor started on the CBD oil in December 2015 with Neurologist approval. So the new journey began…

It started out just stopping every seizure without the use of the heavy duty Diazepam rectal gel. To, currently, preventing them all together. Going on 120 days seizure free on the Charlotte’s Web CBD therapy. There have been a few mild break thru seizures previous to this seizure free streak, but mild and very short lived compared to what they were before the CBD oil therapy…and with absolutely NO side effects! This is now mandatory to keep the seizures and other issues under control and at bay. Taylor has shown great improvement in seizure control with the oil. Moods are better, No Diazepam needed, and NO seizures currently. Taylor has been able to come off of every prescription pharmaceutical medication out of the 8 he was on except 1 of them, and once he is seizure free for 6 months he will be able to wean off that final pharmaceutical medication. So to this family, Charlotte’s Web, Cannabidiol therapy oil, has proven extremely effective and has went above and beyond “said claims”. It’s like a miracle! I cannot express the magnitude of the positive impact these oils have had on their lives and seizure control! CBD oil helping is great, and wonderful news and a miracle to see happening for their son. Thanks to this amazing “Side-effect free”, natural oil, our son is happy, healthy, off big-pharma medications and is seizure free! He has his life back and that is the biggest blessing. We have all we ever wanted for him, good health, happiness, and on the road to life without seizures. So far so good. Whether it decreases them 50%, 75% or 100% , it is all a positive change for him and proof the oil works. It is far better than the 0% he was getting on the pharma medications for all his issues. It is fantastic to see him smiling again and to be able to finally say, “I have Epilepsy… Epilepsy doesn’t have me!”

The future may not always be clear or look bright. Sometimes it’s like you are given a timer as to how long you can look in life, but no matter how the future looks, we have to look up to the sky, keep our heads held high and pray. Hold on to hope, because sometimes, that’s all you’ve got. Hope , faith, and love… that’s what get’s us through. TAYLOR IS OUR CHILD, A CHILD: A REAL PERSON, WITH REAL STRUGGLES. WHO DESERVES A CHANCE AT A NORMAL LIFE. CHARLOTTE’S WEB IS GIVING HIM THAT AND MORE!

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