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“It’s time to celebrate her legacy”: Charlotte Figi to be remembered with tribute concert

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Charlotte Figi
Charlotte Figi became a symbol of the possibilities of CBD

The little girl who inspired the CBD movement will be remembered with an inaugural tribute rock concert on Charlotte Figi Day next month. 

Charlotte Figi’s journey with cannabis reached billions of people worldwide and sparked a movement for the wider acceptance of its medicinal benefits. 

The Colorado girl, who suffered from a severe form of intractable epilepsy known as Dravet syndrome passed away on 7 April 2020, at the age of 13.

By that time she had already become a symbol of the possibilities of CBD and an inspiration for thousands, after CNN’s chief medical correspondent Dr Sanjay Gupta told her story in the renowned documentary ‘Weed’.

After Charlotte began taking CBD oil, produced by Colorado growers, the Stanley brothers – who had been cross breeding a strain high in CBD and low in THC – she saw a significant decline in her seizures.

Charlotte began to lead a relatively normal life, eating, playing and connecting with other children. Despite the odds stacked against her she continued to thrive, outliving the predictions of doctors by five years, thanks to what would become known as Charlotte’s Web CBD.

Following her death last year, Charlotte’s loved ones successfully campaigned for 7 April to be proclaimed Charlotte Figi day in her home state. 

RoC co-founders, Heather Jackson and Paige Figi, mum of Charlotte

Now Realm of Caring (RoC) a nonprofit organisation co-founded by Charlotte’s mum Paige Figi, which helps other patients and families to access cannabinoid therapy, will celebrate her legacy with an inaugural memorial concert – Rock the RoC – set to be broadcast across the world.

RoC co-founder and president Heather Jackson, says Charlotte’s story had a direct impact on saving her son Zaki, who suffers from a rare genetic, catastrophic epilepsy. 

Heather and Paige met when their children shared a hospice counsellor while both were receiving palliative care. Despite strict rules around patient confidentiality, the counsellor risked her job to put them in touch, when she saw the benefits cannabis was having on Charlotte.

Zaki had tried over 17 different pharmaceuticals, all of which failed to bring his epilepsy under control, and was not expected to live to adulthood, when Heather met Paige in 2012.

“The brave act of their family saved mine,” Heather tells Cannabis Health.

Heather and her son Zaki

“I would have tried anything at that point, my son was receiving hospice care palliative services and his condition remitted and stayed in remission for almost four years.”

She adds: “I credit Charlotte for being directly responsible not just for this movement, but for saving my son – and then thousands more.”

Heather and Paige officially founded RoC in 2013, to help other families access cannabinoid therapies.

Within two years it had passed legislation to legalise medical cannabis in 22 states and now works with leading universities to build data and research on the efficacy of cannabis, with the largest patient registry in the world.

RoC provides education, as well as patient advocacy and support with its free call centre which sees referrals come in from across the globe.

Since its inception the organisation has also given away close to $3 million in cash or grants to help families access cannabis. 

“It was started by a couple of mums who were just trying to save their kids,” says Heather.

“The movement stands on the shoulders of the families who were vulnerable enough to share their stories publicly.

“We were just mums and dads who wheeled our kids into meetings and told our stories to senators and legislators which they were able to connect with. 

“Thanks to stories like Charlotte’s, we’ve really changed the face of cannabis.”

Charlotte’s passing touched billions of people worldwide, but due to the circumstances of coronavirus her loved ones were never able to hold a proper funeral or memorial service.

“It’s time to celebrate her life, the legacy that she left,” says Heather,

“We wanted to do that through music, because music heals.

Zaki, at three years seizure-free.

“‘Rock the RoC’ is an online memorial and benefit concert – a virtual gathering around the bonfire –  and we’d love for it to become a flagship event.”

The virtual concert will feature the Avett Brothers and Jason Mraz with more performers to be announced and viewers are invited to stream the concert free of charge wherever they are in the world.

“Even though we would have loved to do it in person, the great benefit of it is that anyone can join from anywhere,” Heather adds.

The two hour production will be broadcast by the Phoenix Group and Studio Number One, founded by creative director Shepard Fairey, has been commissioned to design all the branding and merchandise.

RoC has launched a crowdfunding campaign to support its effort, with all proceeds benefiting Rock the Roc and supporters are encouraged to donate to help fund future medical cannabinoid research. 

This is absolutely a celebration of life and a way for us to pull our community together and raise money for research, education, advocacy work, the grants that we give, but it all comes down to access in the end,” says Heather.

“When you need this to stay alive, like my son does, the fact that we’re still having to have these conversations is something which causes me pain.”

She adds: “It’s not a religion, it’s not something you have to believe in, there’s science to back it up and there are real stories.

“There’s still a long way to go but without Charlotte’s stories and others, the movement wouldn’t be anywhere near where it is today.”

Rock the Roc will take place on 7 April, 2021. Find out more and donate to the crowdfunding campaign here

Sarah Sinclair is a respected cannabis journalist writing on subjects related to science, medicine, research, health and wellness. She is managing editor of Cannabis Health, the UK’s leading title covering medical cannabis and CBD, and sister title and Psychedelic Health. Sarah has an NCTJ journalism qualification and an MA in Journalism from the University of Sunderland. Sarah has over six years experience working on newspapers, magazines and digital-first titles, the last two of which have been in the cannabis sector. She has also completed training through the Medical Cannabis Clinicians Society securing a certificate in Medical Cannabis Explained. She is a member of PLEA’s (Patient-Led Engagement for Access) advisory board, has hosted several webinars on cannabis and women's health and has moderated at industry events such as Cannabis Europa. Sarah Sinclair is the editor of Cannabis Health. Got a story? Email sarah@prohibitionpartners.com / Follow us on Twitter: @CannabisHNews / Instagram: @cannabishealthmag

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