CBD and Cannabinoids to Help People with Epilepsy: An Interview with Realm of Caring Foundation

June 29, 2022
Epilepsy

By Amber Kaiser  

I was first introduced to Realm of Caring (RoC) through Charlotte’s Web a few years ago when I started having seizures again and had to get back on epilepsy medication. Honestly, I didn’t want to get back on an antiepileptic drug right away because of the side-effects I have experienced for many years in the past (and the fact that they didn’t work and I eventually had brain surgery; you can read a little more of my story here). When I talked with my neurologist at that time about CBD oil, they thought it was fine to try, but highly recommended I still take a prescription medication (which I did again eventually). Despite that, through my own research, I heard about Charlotte’s Web, how they started because of Charlotte Figi’s uncontrollable epilepsy, and the benefits of their high-quality CBD oil and decided to try it. Because I took it for medical reasons and had questions, Charlotte’s Web referred me to RoC for any cannabinoid questions and suggestions. RoC has been such a kind, educated and highly informative group of people and organization to connect with. 

To learn more about RoC and to share their services and epilepsy related information with you here, I communicated with Jan Morton, one of their amazing RoC Care Specialists. Read the interview below for more!

When, why and how did Realm of Caring start?

Realm of Caring Foundation (RoC) is a 501(c)(3) nonprofit entity that started in 2013 and provides support for families using cannabinoid products. Led by Heather Jackson (founder and Mom to CBD’s 2nd success story, Zaki) and co-founded by Paige Figi (Mom to CBD's 1st success story, Charlotte), the RoC is working non-stop to provide families with the best information available. We believe that QUALITY of life matters and we support affordable, high-quality cannabinoid access, NOW. Realm of Caring focuses on Research, Education, Advocacy, and Life improvement through Measurable results. For some, cannabinoid products may offer their only chance for relief. Through ongoing research projects, RoC is becoming an educational resource for consumers, physicians, scientists, governments and the media.

How has Realm of Caring grown over the years?

 

The impact of RoC knows no bounds! Realm of Caring has grown from helping Colorado refugees in the very beginning to now providing assistance around the world! Our Care Team Specialists have served over 70,000 clients globally for FREE through one-on-one support, research, education and increasing access to cannabinoid therapy. Advocating for cannabis is extremely important to us! Realm of Caring has aided 22 states in passing cannabis and hemp legalization. Our Observational Research Registry (ORR) is an Institutional Review Board (IRB) approved, online survey study in partnership with Johns Hopkins University, which examines the health effects of cannabinoids. It is open to anyone in the world with an email address. This study has included 4,000 participants to date, providing 5 million data points.

These significant findings have paved the way for clinical trials, helped companies to determine how their products are helping people and informed millions on the benefits of cannabinoid therapy. The data accumulated over the past nine years has provided quality education. This education has been delivered through many mediums by Realm of Caring to help medical professionals assist their patients, dispensaries to responsibly serve their customers, legislation to pass at state and federal levels and consumers to make informed decisions about their cannabinoid choices. Currently, we have 3 published peer-reviewed papers; the first paper based on this research was published in 2020 finding that 77% of users attributed positive effects to the medicinal use of cannabinoids. Participants do not need to have a diagnosis or be using cannabinoids to join the study and are offered a compensation gift for their participation. 

Have you found pure CBD and/or THC products help some people with epilepsy? Do they take it in addition to other medications? Have there been any cases where it can work on its own?

Yes, we have many epileptic clients that have shown great success with CBD and/or THC, including our founders' children! Some clients have been able to completely stop their medications. However, we do suggest working with the prescribing physician on this topic, as we are not healthcare professionals and medications are not within our realm of practice. Cannabinoid therapy is completely individualized, meaning there is no "set" amount for everybody. This can be a trying process that requires patience. Realm of Caring services are imperative to our shared community; to answer their questions and address their concerns. 

Do you partner with a lot of different companies who supply CBD/THC products?

We have partnerships with reputable companies in the United States and beyond. These Supported Brands have been thoroughly vetted to meet RoC's high-quality standards. Our Development Department actively works towards increasing our partnership with other cannabinoid product providers. Those who register with Realm of Caring are granted access to available discount codes provided by our supported brands, upon request.  

It’s amazing the amount of research and resources I have found on your website. Do you have working partnerships with any doctors or hospitals? Do they see the benefits of cannabis products? Do any introduce the products to their patients? 

In addition to our Observational Research Registry in conjunction with Johns Hopkins University, we do have a list of healthcare professionals who are open to talking about cannabinoid therapy. These healthcare professionals are not affiliated with nor endorsed by Realm of Caring Foundation and are listed per their request as a resource to our members seeking their contact information. If you know or are a healthcare provider who would like to be added to our list, we may be contacted for more information. The following healthcare providers can request to be added to our list: Physicians (DO/MD), Registered Nurses, Psychiatrists, Dentists, Physical Therapists, Chiropractors, Reflexologists, Dieticians, Herbalists, Naturopaths, Acupuncturists, Massage Therapists, Osteopaths, Podiatrists, Dermatologists and Veterinarians. 

 

What are your thoughts on where we are headed with more research and using CBD/THC to treat people with epilepsy? Is the industry working on any new products? Do pharmaceutical companies try to work with hemp/cannabis companies? I’ve heard of a medication called Epidiolex that uses CBD for a few rare types of epilepsy.

 

Evidence for cannabis use for epileptic conditions actually dates back centuries. And what can be considered the first detailed modern study of the use of cannabis-based products for anti-seizure benefits was published in 1843 by Irish physician William O'Shaughnessy. It was in the late 1980’s and early 1990’s where researchers began to look more closely at CBD and CBD to THC ratios. I say this because we have a lot of historical information that speaks to the benefits of cannabinoid therapy for seizures. 

More research could help us to better understand things such as starting administration levels and titration, long term safety, and the pros and cons of using a full-spectrum formula versus an isolate. Full-spectrum products contain all of the cannabinoids, terpenes, and flavonoids of the hemp plant with nothing deliberately removed from the process. Isolate refers to products containing just the CBD molecule. The FDA approved CBD drug, Epidiolex, is an isolate that was originally only approved for Lennox-Gastaut Syndrome (LGS) and Dravet Syndrome.

Our own research we do in collaboration with Johns Hopkins University helps us to understand these lingering questions because we are taking a look at the medicinal use of cannabinoid products on individuals’ health conditions in their natural environment. Hemp and cannabis companies are not subjected to traditional drug development procedures, so our research helps us to understand the efficacy and safety of these products. 

Findings from our research:

In July 2021, Realm of Caring and Johns Hopkins University School of Medicine published research on CBD and health among individuals with epilepsy. The purpose of analyzing this data from our observational research registry was to evaluate how CBD product use is associated with quality of life, mental health, healthcare utilization, and epilepsy-specific outcomes within a large, observational group of people with epilepsy who were registered between April 2016 and July 2020.

Of the 1,783 individuals enrolled in this online, self-reported survey researchers identified a sample size of 418 participants. Of the 418 participants, 93% had listed epilepsy as their primary medical condition with the remaining noting epilepsy as a secondary medical condition. In this sample size, there were 71 adults and 209 adult caregivers of children or dependent adults who were utilizing CBD products for medicinal use. In addition, there was a control group of 29 adults and 109 adult caregivers who were considering CBD use but had not yet begun. 

Compared with controls, CBD Users had a greater health satisfaction, higher ratings of quality of life, and better scores on psychological health. Taking a deeper look, CBD Users reported lower anxiety and depression and improved sleep scores.  

Other findings that were of significance relate to pharmaceutical use, healthcare visits, and caregiver burden. CBD Users had lower instances of reported prescription medication use, lower medication-related adverse effects, less ER visits, and less missing school and/or work days. In addition, caregivers of CBD Users that noted consistent use through the follow-up period reported significant decreases in the Caregiver Burden total score.

This is amazing. I love hearing about this study and these results! Thank you for sharing here. What are Realm of Caring’s plans for the future?

ADVOCACY & EDUCATION: A 501(c)(3) non-profit foundation is not allowed to be involved in political issues or intervene in any political activity. RoC is forming a 501(c)(4) non-profit entity, to be allowed to participate in political activity which can help lead the way to cannabis acceptance through improved legislation. RoC strives to attend many community events as our advocacy campaign is to educate and inform our voters.

ELEVATE & CONTINUE RESEARCH: We are planning to create follow up studies to understand cannabinoid therapy for specific ailments and conditions. We are also currently working on our 4th published research paper in partnership with Johns Hopkins University, which helps to legitimize cannabinoid therapy. 

EXPAND COMMUNITY SUPPORT: At one time we were able to offer a financial grant assistance program. We would love to re-institute this! Realm of Caring relies on the generosity of donors to allow us to fulfill our mission and offer support to communities around the world. If anyone is interested in donating to Realm of Caring Foundation they may do so here or contact us for more information. Any and all donations are greatly appreciated by us and our shared community! 

Is there anything else you would like to share and want readers to know about Realm of Caring? 

Our why is simple: Charlotte Figi and the millions of other people like her! Charlotte’s story shifted the paradigm of wellness and access for all, as the world watched through the empathetic eyes of Dr. Sanjay Gupta with his captivating docuseries, Weed. Charlotte’s impact remains the footprint of our path forward, toward care for all through the healing power of the earth. Her legacy became a foundation of education, research and impact, one that grows its sphere of influence to an over-expanding circle of seekers, families and souls as they journey toward a more healing future. Charlotte’s sudden passing on April 7, 2020, is a heavy reminder that life is precious, that the dignity of choice is critical and that the courage of innocence is a guidepost for human wellness. Colorado Governor Jared Polis proclaimed April 7 as Charlotte Figi Day, an annual celebration of this special girl. On the 1-year anniversary of Charlotte’s passing, Realm of Caring hosted a virtual celebration of her precious life - Rock The RoC. Please invite your community members to watch this powerful memorial. 

Our services are free and our website is loaded with a plethora of information that your readers may find extremely helpful, such as our research library, client education series and informational blog, administration calculators, plus much more. However, in order for us to legally assist our community, clients are required to register. Below is our contact information:

Website: www.realmofcaring.org

Email: info@realmofcaring.org

Phone: 719-347-5400 x1 for Care Team Specialist

Please feel free to follow us on social media: Facebook, Instagram, Twitter , YouTube, LinkedIn  

I hope you learned something about Realm of Caring here that may help you or your loved one! Feel free to email us at hello@neureka.ai with any questions and stay connected with us on Twitter, LinkedIn, Facebook and Instagram!

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