When a cause loses its lodestar, how do the survivors carry on the legacy? And how does a 13 year old leave such large shoes to fill in the first place?
“My personal goal is that we don’t forget as an industry, how we got started so that Charlotte can have that legacy,” Heather Jackson, the co-founder and CEO of Realm of Caring, told The Cannigma.
Last April 7th, 13-year-old Charlotte Figi, whose battle with a rare, catastrophic form of early childhood epilepsy called Dravet syndrome raised awareness for medical cannabis across the world, died of cardiac arrest and respiratory failure brought on by a seizure.
A year later, the non-profit “Realm of Caring” is planning to mark the anniversary of her passing with a special virtual concert and fundraiser to help cement Charlotte’s legacy and provide the community with an opportunity to come together and mourn — albeit virtually.
“We wanted to do something to memorialize Charlotte and celebrate her life because with COVID the family hasn’t had an opportunity. And as a community, really, we haven’t had an opportunity to really grieve together through that loss,” Jackson said.
“Everybody felt Charlotte was their child, too. And in a lot of ways, she is,” Jackson added.
The namesake of ‘Charlotte’s Web’
Charlotte’s battle with Dravet syndrome and her medical cannabis treatment were covered in depth in the 2013 CNN documentary “Weed,” which brought the issue of pediatric medical cannabis treatment to a massive audience.
Figi’s seizures began soon after her birth and by age three she was having hundreds of seizures per week. She was diagnosed with Dravet syndrome, a rare and drug-resistant form of epilepsy. The only thing that provided relief was CBD oil, which her mother received from a friend in their home state of Colorado.
Paige met with the Colorado-based cannabis cultivators the Stanley brothers who had grown a high-CBD strain that they later named “Charlotte’s Web” in honor of Charlotte. In the years to come, Charlotte’s Web would become one of the biggest names in the CBD industry.
The “Rock the ROC” Charlotte Figi memorial & benefit concert will feature headliners the Avett Brothers, Jason Mraz (who collaborated on the song “Oh Charlotte,” written in Charlotte’s memory), and Michael Franti, as well as grammy-nominated artist Ruthie Foster, Glen Phillips, Graham Nash, the War and Treaty, Johnny Sim, and special appearances by Dr Sanjay Gupta and Colorado Governor Jared Polis.
The concert is scheduled for April 7th, the one year anniversary of Charlotte Figi’s death. The organizers had initially planned to hold it at Denver’s famed Red Rocks Amphitheatre, but due to the pandemic, will instead stream it live on Nugs.tv.
Viewers can sign up for a free ticket and are encouraged to leave a donation at www.rocktheroc.org, with all proceeds going to Realm of Caring’s efforts to help people dealing with life-limiting and chronic health conditions learn more about medical cannabis through research, education, and grants.
She likened the concert to a virtual bonfire of sorts — the ones held back in 2012 and 2013 at the house of Paige Figi, Charlotte’s mother and the co-founder of Realm of Caring.
‘She carried the world on her shoulders’
At the time of Charlotte’s passing last year, it was widely-reported that she succumbed to complications brought on by COVID-19 (including by this publication). The Figi family later issued a statement in which they wrote that the entire family had been ill for around a month beginning in early March, but that Charlotte tested negative for COVID-19 when she was admitted to the hospital with worsening symptoms on April 3rd. She was discharged from hospital on April 5th but two days later she suffered a seizure, which resulted in respiratory failure and cardiac arrest.
In a statement following her death, Charlotte’s Web stated that “Charlotte was 10 feet tall and carried the world on her shoulders. Inspiring is a lacking word, as are courageous and vivacious and strong and beautiful. She was divine. She grew, cultivated by a community, protected by love, demanding that the world witness her suffering so that they might find a solution.”
A year later, the world of cannabis has gone through a number of sweeping changes as a result of the pandemic, which may have seemed hard to believe back when that CNN documentary aired in 2013.
“I never thought that I would see cannabis become an essential business. This means, essentially, that we understand as a community that cannabis is medicine and that people need it all the time, and more so when you’re dealing with a crisis situation,” Jackson said.
She also described how during the pandemic children like her son Zaki, who has a rare form of epilepsy called Doose Syndrome (Myoclonic Atonic Epilepsy), have been unable to fully access their regular routine and their support and therapy schedules.
Prohibition ‘is absolutely asinine’
She added that pediatric medical cannabis treatment is “definitely in a better spot than 10 years ago,” and that the stigma and sensationalized headlines that surrounded such stories are largely a thing of the past. That said, there’s still a lot of room for improvement as cannabis remains illegal on the federal level.
“You can’t get medical cannabis everywhere so there’s still this issue where your zip code literally dictates whether you can help your loved one and that, to me, is absolutely asinine that we’re still dealing with that in 2021.”
She also said that while today there is a far more established community of parents who provide their children with pediatric medical cannabis, it can still be difficult to talk about cannabis with your doctor and many still prefer not to talk about it publicly.
While Charlotte became the face of pediatric cannabis treatment, today Realm of Caring works with more adult patients than children, especially adults who use cannabis to treat pain, Jackson said.
But however the organization has evolved, Jackson said it is still about forming a community of people coping with the same problems, fears, and pains, who are looking for a way to use their struggle for good.
“It’s about not having to go through this alone. And you think about all the great things that have been done, often by parents who are just absolutely leveled by what happened and they have to make meaning about it in some way.”