Charlotte Figi’s passing on April 7, 2020, rocked the cannabis community.
Figi suffered from a rare form of epilepsy called Dravet syndrome, which she treated with CBD.
Her highly-publicized journey with cannabis paved the way for many others to have safe access to plant medicine.
This petite 13-year-old girl ultimately had one of the loudest voices for our growing industry.
The Stanley Brothers created the formula that helped Figi, which eventually became the foundation for their company Charlotte’s Web.
Their memoriam to Figi stated, “Her story built communities, her need built hope, and her legacy will continue to build harmony.”
Her story hasn’t ended and will continue to grow with each patient who has found healing in the cannabis plant.
Heather Jackson knew Figi firsthand; she bonded with the family due to her own son’s battle with epilepsy and found solace in cannabis.
Jackson founded the nonprofit Realm Of Caring (RoC) alongside Figi’s mother Paige, to help other patients experience the benefits of cannabis.
Healing was a recurring theme in Cannabis & Tech Today’s interview with Jackson, as it is the driving motivator behind her organization and their recent Charlotte Figi inspired virtual benefit concert “Rock the RoC.”
The virtual concert, held one year after Figi’s passing on April 7, garnered over 50K views and raised over $250K for cannabis research in Figi’s legacy.
Healing Through Music and Community
A lot of work went into curating the playlist for the concert and finding stellar artists whose values aligned with the message they were trying to send.
The cannabis community is mourning, people have suffered this year due to the pandemic, so, their plan was to do what the cannabis community does best — unitite, celebrate together, and heal (you’ll be seeing this word a lot.)
Attendees got the chance to enjoy the likes of The Avett Brothers, Jason Mraz, and Wesley Shultz of The Lumineers, among others.
With enthusiastic community support and the success of the concert, Jackson stated the show will become a yearly event.
“Music has healed me over the years. My son, similar to Charlotte, has a catastrophic epilepsy diagnosis, and music connects and it heals. And there’s a lot of actual songs that, even for me through the years, have just saved me,” said Jackson. “It’s really a personal experience and to be able to share that with everyone… and everybody’s faced loss this last year. Everybody has. And so, to come into a place where we can lay that loss and heal a little bit, I think is the goal.”
While bringing the community together to celebrate the life of a girl who has saved countless others was incredibly important, the goal was also to shine a light on the hard work that Realm of Caring is doing for the cannabis industry.
More insight into the work they do would provide more opportunities for people to get safe, accessible medicine.
“We’re a small nonprofit, but the help that we give to consumers and medical professionals, and the research we’re getting accomplished, and grants, and the advocacy work, it’s really, really important. And for me, that’s the piece here, is to carry on Charlotte’s legacy,” said Jackson. “You know, she was patient zero, if you will, my son was the second, and how do we carry that on? How do we continue to help this community in a real way?”
Continuing Charlotte Figi’s Fight for Accessible Medicine
Realm of Caring was created to help improve quality of life through cannabis research, education, and building community.
They have the largest research registry in the world tracking naturalistic cannabis use, which helps patients and medical professionals overwhelmed by the amount of cannabis products on the market to find the best solution for their ailment.
What started out as a small organization created by two passionate mothers now serves over a hundred thousand people all over the world.
Jackson shared a story of a customer, a grandmother, who took care of her grandson with autism and seizures.
She reported to RoC that because of cannabis, her grandson had stopped self harming and hadn’t had a seizure in a year.
“My son was in hospice and wasn’t expected to live into adulthood, and he’s going to be 18 next month. And this kid is healing. And so we’ve used cannabis every day for almost nine years now. And four of those years were completely seizure-free,” said Jackson. “And we see this over and over and over again, quality of life, health satisfaction, reduction in pharmaceuticals. Our research suggests a statistically significant decrease in hospitalizations, hospital utilization, and pharmaceutical usage. So, it is medicine.”
Guiding Patients to a Healthier Future
As with any medication, the experience with cannabis can differ from person-to-person, so RoC focuses on what success would look like for each individual patient.
Whether that’s helping them sleep better, reduce pharmaceuticals, or in extreme cases, making their last few weeks on Earth painfree, they want to make sure those patients aren’t going through their cannabis journey alone.
This is why RoC’s current priority is a huge data initiative, compiling data from their call center interactions, e-mails, and research, to obtain insights that could help other patients.
“If you reach out and you’re me, and you’ve got a child with epilepsy, we’re able to say, okay, there are 450 people in the registry with epilepsy. They’re taking an average of 67 milligrams a day. These are the results they’re seeing. And that’s really powerful for someone. Because when I got started, there was nothing,” said Jackson. “We were just figuring it out. We knew absolutely nothing. We didn’t know how much to take. We didn’t know how quickly to go up on dosing. I mean, nothing. So the data is just really important. And that’s the big initiative.”
If you or a loved one are suffering with a debilitating illness, you can probably relate to Jackson’s experience of searching for an alternative, natural approach to medicine, when all else has failed.
With organizations like RoC, you don’t have to navigate this process alone.
“There are so many products, there are so many options. There are so many ways to go. And if you just try it and it doesn’t work, there are unlimited other potential cannabis products, and variations, and things you can try,” said Jackson. “So to go to an organization that has quite a bit of data to help you, ‘Start with this, and then move to this…’ And then you essentially have a coach. That’s really helpful.”
If you’re interested in learning more, register on RoC’s client portal to access product guides, forums, dosing calculators, and other resources.
Jackson says 90% of the money raised goes to programs and services.
“The industry cares about social impact. They want to be a brand that is supporting this community that they make money off of. Realm of Caring is one of the only non-profits they can do that through,” said Jackson. “So I think what’s beautiful about this community is we can all come together and really, really affect a big change in the world.”
