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”.
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!
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]
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.
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.
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!
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.
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!
Aline was diagnosed with hydrocephalus, a build up of fluid in the brain, when her mom was seven months pregnant. At one-month old, Aline had a Pudenz valve placed which got infected within two weeks. She was in the hospital for about seven months under antibiotics and she started having seizures by the third month that she was in the hospital due to the severity of the infection. Since starting cannabinoid therapy, Aline has changed in a significant way. She’s sleeping better, her appetite is just amazing, she’s more aware of her surroundings and her squint eye seems to get better everyday. Not to mention that her seizures have dropped to 0 in over 6 months!!! The most exciting is that pre-school is now a reality; she has started the past week and she’s enjoying it tons! We have also been able to go out/travel without being worried sick about her seizures. I would love to mention that my relatives are also doing better than ever, as it was hard for them to know that we were always alert and that we might have had to run to the hospital because Aline would seize. The impact is just so much! I’ve mentioned previously we can now see for a better way of living for us and Aline. The whole family is just overwhelmed of how Aline has progressed and how her seizures have dropped. They have been through a lot with with us, going to the hospital, staying with Aline at the hospital (as an emergency room visit we knew for sure that she’d stay in for at least 3 days). We are all just very happy with Aline’s progress. You can’t imagine how happy her cousins are, as she can now attend various events, she even went to a baseball game last week!! We (my whole family and I) would like to thank you from the bottom of our hearts for the opportunity you are giving Aline for a better chance at life. We cant express and thank you enough for how much you are doing for us.
Sadly just 10 days after our son’s story was published in the local Highlands Ranch Herald for making it four years and nine months seizure-free, Benjamin started having seizures again Thanksgiving night 2015 which was nine months after he was weaned from all pharmaceuticals.
Benjamin 14 years old began to have Tonic-Clonic type seizures every few days with some lasting up to four minutes in length; he had four of these within 14 days into December. It was advised by his neurologist at the Denver Children’s Hospital that we put him back on pharmaceuticals. After some research and a new article that expressed recent warnings from the FDA in regards to suicidal thoughts and actions as a side effect of 11 anti-epileptic drugs, three of which Benjamin had been on before and was being asked to take again, did not seem like an option any longer! So in mid-December I made the decision to start Benjamin on Charlotte’s Web Hemp Extract after contacting the Realm of Caring in Colorado Springs on how to purchase Charlotte’s Web, and help me with dosing so that we could keep Benjamin seizure-free once again in a natural way without side-effects!
Within a couple of days I shared the news of our new therapy change for Benjamin with his school nurse as I had for any other medication change over 10yrs since pre-school (I also included in the email, his teachers and principal). I knew we lived in Colorado and marijuana itself is legal and though I am giving my son hemp extract which is considered a dietary supplement that can be mailed to all 50 states; I did not think that we would have legal issues surrounding our choice for our son to have an alternative medicine.
To my surprise I received a call from Child Protective Services three days before Christmas asking me if I had a prescription to give my son Charlotte’s Web. In my inquiry to find out who reported us I would eventually be threatened with a caseworker if I did not comply with the child welfare administrators request for me to provide two doctors notes. I quickly realized that she was expecting me to have a registration card for my child taking a dietary supplement which she was requiring under article XVIII in section 14 of the Colorado Constitution as it applies to medical marijuana. I was able to point out to her that if she just read a little further in section 16 of the Colorado Constitution as it talks about hemp, it is exempt from being referred to as marijuana and therefore I was not required to provide a registration card to give my child a dietary supplement of hemp extract. This would later be confirmed through the Colorado Department of Public Health and Environment (CDPHE) who provide the registration cards to medical marijuana patients and they would also tell me that if our child is taking hemp we do not need a registration card! So after educating our local Department of Health and Human Services on the differences between hemp and what they consider to be a marijuana derivative she changed her tune and asked for a list of prescriptions that my son was taking and only then would she closed my case but not until after Christmas. She let us believe through the whole Christmas holiday weekend that we might be paid a visit. We feared that if the caseworker came to our house that we would have lost our son over a dietary supplement they knew nothing about, all in retaliation for asking questions.
By asking questions it would be revealed to us that we were reported for a “suspicion of abuse and neglect” because we told the school that we were giving our child Charlotte’s Web. We were not asking to give it to him on school grounds or asking a nurse to administer it, we were just merely stating that we were changing his therapy at home but they could watch for any changes at school since they were with him the majority of the day! We figured out it was the school nurse based upon what she said in the transcript read back to us, since CPS could not give us a name of who reported. It would be expressed to me that nurses are mandatory reporters in the community, in an effort to mitigate any wrong doing. However, I would discover the school district had actually recommended that all school nurse report ALL FAMILIES on a suspicion of abuse and neglect regardless of whether they thought parents like me were abusing or neglecting my child. The school district actually felt by having their nurses report families to CPS they were protecting themselves, whether a family was providing their child with what they consider a marijuana derivative including hemp.
Of course I had every right to report the school nurse to the Department of Regulatory Agency (DORA) for false reporting. In her report, the nurse stated that “the child is very safe and family very loving” which would be a contradiction to why she would report based upon a suspicion of abuse and neglect. She also added, she was only reporting us on a recommendation by her employer so that she would not lose her job. Since I have a history of working with nurses in my past position as an administrative assistant (in the healthcare field); I did not feel it was ethical for an employer to demand their nurses to report families like ours when they did not equip them with the educational tools to make the right decision, on cannabis or the laws surrounding it. I never reported the nurse. It has been very important for me to not only look out for my family, but also for those who are responsible for looking after my child. Part of my mission was to make sure the school district was not pinning nurses against families and vice versa or families would be hiding in the shadows due to a lack of trust!
Within the first couple of weeks into the New Year 2016 I would be introduced to Stacey Linn and hear her story with son Jack Splitt, a young man just a little older than Benjamin with cerebral palsy who was not allowed to have his medical marijuana patch on at school. Stacey Linn passed Jack’s Amendment in 2015, so school districts could start writing medical marijuana policies for their students and allow medical marijuana to be administered on school grounds in a discrete location. Unfortunately no school district wrote policy for medical marijuana because it was only recommended at that time.
Stacey Linn would accompany me to meetings at the school district where we asked questions why they would demand their school nurses to report families like us to Child Protective Services for giving our children alternative yet legal medicine. The school district felt it was a liability for their nurses and they were in fear of losing Federal funding if we brought cannabis on campus to give to our medically fragile children. I would eventually file a case with the ADA (Americans with Disabilities Act) manager at the school district since I found it discriminatory for nurses to reporting children to Child Protective Services when most of these children are medically fragile, are usually on an IEP (Individual Education Plan) and the school district gets Federal funding for these children. It was quickly realized that the school district like others in Colorado had not written a policy surrounding medical marijuana, cannabis, or hemp etc… My job turned to working with school board president Meghann Silverthorne and vice president Judith Reynolds to get a policy rolling in Douglas County, and I had their support right away! I attended every school board meeting since February to bring light and educate the other school board members what happened to us and how we would like to see a policy not only implemented here, but our nurses educated so what happened to us would never happen to another family!
Stacey Linn would eventually start working with Representative Jonathan Singer to bring forth HB16-1373 “Students Medical Marijuana Use At School” also known as “Jack’s Law” to legislators at the State Capitol, so that school districts in the entire state of Colorado would have to write medical marijuana policy! I and a lobbyist by the name of Cindy Sovine-Miller were brought into help with the grassroots efforts in spreading the word about this new bill along with many other parents who were fighting for this too! One day with Benjamin at the Capitol, we ran into our Conservative Senator in Douglas County, Chris Holbert. After hearing our story, offered to Co-sponsor HB16-1373 in the Senate especially for Benjamin. Since the bill mainly laid out plans for medical marijuana in regards to Article XVIII in section 14 of the Colorado Constitution it was not applicable that hemp in section 16 of the Colorado Constitution be brought into the bill since they are different. It was still up to me to make sure that when my school district was writing their policy that they differentiated hemp from marijuana, but the question remained if they would since a Colorado Springs school district D49 would be the first in the state to adopt a medical marijuana policy though they did not differentiate hemp as I suggested in a school board meeting they held in the spring.
After 91 of 100 legislators between the House and Senate voted YES on HB16-1373, on Monday, June 6th 2016 with Benjamin looking over Governor John Hickenlooper’s shoulder, he sealed the deal by signing HB16-1373 “Students Medical Marijuana Use At School” into Colorado law! We were a very proud family to be there at that moment in time, with Jack, Stacey, along with other families watching history being made! Benjamin and Jack would be given one of the pens the governor used to sign the bill with as well!
Our job was not done just yet, we are now in the implementation stage. We received word that the Douglas County School District board of directors will be presenting what we call, “Benjamin’s Policy” at the next school board meeting on Tuesday, July 19th 2016! Not only will the school district be taking into account Jack’s Law (we just passed regarding medical marijuana), they have also heard my request to differentiate hemp oil, cannabinoid products as well as add the following to protect the nurses and staff:
Even though D49 was the first to vote on their Medical Marijuana policy, Douglas County is actually the first to write a comprehensive Cannabis policy that includes the Administration of Medical Marijuana, Hemp Oils and/or Cannabinoid Products as well as protecting their staff and end the criminalization of families trying to give their medically fragile children a better quality of life!!!
We are proud of our school district that heard our requests and wrote a policy that fits the need in our community, this way families who have been hiding it can come out of the shadows, and nurses do not have to fear losing their jobs when they know we are actually helping our sick kiddos!!! As of Saturday, July 16th 2016, Benjamin will be seven months seizure-free, but not only is he free from seizures again, this time his world has opened up more thanks to Charlotte’s Web Hemp Extract, his memory has improved to the point he can sing along to songs on the radio because he can remember the words. He was able to read short speeches before legislators this year, but he would have never been able to do that prior to Charlotte’s Web. He is communicating, learning and building things…without any adverse side-effects…life is good for Benjamin and it was worth the fight so others would not have to worry about what we went through!
When I think back to the mom I was 11yrs ago when Benjamin was first diagnosed with Epilepsy at 3yrs old. On how the pharmaceuticals scared me and changed my son in negative ways…I realized my fight this year was for the scared mom I was 11yrs ago. I wanted this alternative back then, but if I had to fight this fight for cannabis back then I would have not been strong enough to do what I did this year!!! It was worth it all; even for the parents who do not yet know they might need this same alternative one day, but will not have to fight for access in schools in Colorado!!!
Written by Amber Wann Permission is given to share all or parts of our story in a way that would benefit others!
