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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.

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“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

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Epilepsy

CBGA may be ‘more potent’ than CBD against seizures in Dravet syndrome

Dr Lyndsey Anderson said there is more to explore when it comes to creating more treatment options for Dravet syndrome.

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Dravet Syndrome: A row of test tubes containing CBGA oil with a doctors white gloved hand holding one up to the light

Scientists say they have found the ‘Mother of all cannabinoids’ which may help to reduce seizures in Dravet syndrome.

A new study on mice from the University of Sydney found that three acidic cannabinoids found in cannabis reduced seizures in Dravet syndrome, an intractable form of childhood epilepsy.

The three cannabinoids are cannabigerolic acid (CBGA), cannabidivarinic acid (CBDVA), cannabigerovarinic acid (CBGVA). All three but CBGA in particular “may contribute to the effects of cannabis-based products in childhood epilepsy” noted the researchers and were found to potentially have ‘anticonvulsant properties.”

The study marks the first time that three acidic cannabinoids were found to potentially help reduce seizures for Dravet syndrome.

Speaking with Cannabis Health News, the lead author of the study, Dr Lyndsey Anderson, said: “We found that CBGA exhibited both anticonvulsant and pro-convulsant effects. CBGA was more potent than CBD against febrile seizures in a mouse model of Dravet syndrome. We also found that a combination of CBGA and clobazam was more effective than either treatment alone. Additionally, we found that CBGA was anticonvulsant in the maximal electroshock acute seizure model, a model for generalized tonic-clonic seizures.”

She added: “CBGA did, however, present some proconvulsant effects. The frequency of spontaneous seizures in the mouse model of Dravet syndrome was increased with a high dose of CBGA. Also, CBGA was proconvulsant in the 6-Hz acute seizure model, a model of focal, psychomotor seizures.”

Although CBGA shows promise, Dr Anderson also stressed that it needs more research before it can replace CBD. She cautioned that Dravet syndrome patients may still need to proceed with caution.

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“Artisanal cannabis-based products are believed to reduce seizures in Dravet syndrome patients,” she said. “As these oils contain rare cannabinoids like CBGA, it is possible CBGA then contributes to the anticonvulsant effects of these artisanal cannabis oils. However, there were proconvulsant effects observed with CBGA, suggesting that Dravet syndrome patients may need to proceed with caution. The proconvulsant liability of CBGA would need to be addressed before it replaced CBD as an anticonvulsant.”

What is CBGA?

Sometimes referred to as ‘the mother of all cannabinoids,’ CBGA is the precursor molecule to many different cannabinioids including CBD and THC. It is thought to help some diseases such as colon cancer, metabolic disease and cardiovascular disease. It is a non-intoxicating cannabinoid much like CBD.

Dr Anderson explains that more research is needed to explain how the three cannabinoids work together.

“We don’t know how they work together yet,” she said. “We found that CBGA, CBDVA and CBGVA were all individually anticonvulsant against thermally induced seizures in the mouse model of Dravet syndrome. We did not investigate whether a combination of these three cannabinoids would result in a greater anticonvulsant effect than either cannabinoid alone. Future work will definitely explore this possibility.”  

CBGA future research

This isn’t the end of the research into CBGA for Dravet Syndrome. Dr Anderson said there is more to explore when it comes to creating more treatment options for Dravet syndrome.

 

She said: “Next on the horizon for this research is to explore whether the anticonvulsant properties of CBDVA and CBGVA translate to other seizure types including spontaneous seizures in the mouse model of Dravet syndrome. Additionally, we have extensively interrogated the anticonvulsant potential of individual cannabinoids and identified ten with anticonvulsant properties.”

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“We are now interested in investigating what happens when we combine these anticonvulsant properties. It remains an open possibility that greater anticonvulsant effects are achieved when the cannabinoids are administered in combination.”

The study was recently published in the British Journal of Pharmacology (DOI: 10.1111/bph.15661)

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New York regulators vote to allow home grow for medical cannabis patients

The new regulations would allow medical cannabis patients and carers in the state a safe, cost-effective way to access their medication

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New York: The statue of Liberty against a blue sky and the skyline of New York city

The proposed regulations would allow medical cannabis patients and carers in New York to grow up to six plants, indoors or outdoors, for therapeutic use.

New York cannabis regulators voted unanimously for the proposed regulations which would not only allow qualified patients to grow their own plants.

According to a slide from the Cannabis Control Board presentation, patients would be allowed six plants each but carers with more than one patient,  can “cultivate 1 additional cannabis plant for each subsequent patient.”

The new regulations would impose a duty on patients to ensure no one under the age of 21 can access the plants or any products cultivated from them.

Landlords would also have the option to prohibit their tenants from growing cannabis on their property if they chose. The products must not be processed using anything other than alcohol.

The regulations will now have a 60-day public commentary period before review.

Tremaine Wright, chair of the Cannabis Control Board (CCB) said: “We are proud to present those proposed regulations. The home cultivation of medical cannabis will provide certified patients with a cost-effective means of obtaining cannabis through personal cultivation while creating a set of standards governing the conduct and activities relating to the personal cultivation of cannabis.”

In a press release, the CCB also gave an update on the expungement of cannabis convictions. “Approximately 203,000 cannabis-related charges are presently being suppressed from criminal background searches and are in process of being expunged, adding to the approximately 198,000 records that were expunged as part of the first round of cannabis expungement following legislation enacted in 2019.”

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New York recreational market

Earlier this year, New York. It would become the 16th US state to legalise recreational cannabis creating thousands of jobs and tax revenue. The bill was signed into law by Governor Andrew Cuomo in March.

The law would allow for possession of up to three ounces of marijuana for personal use. It would allow licensed dispensaries to sell cannabis products to those over 21.

Neighbouring states who have already legalised marijuana, including New Jersey and Massachusetts, meant that New York citizens were leaving to access cannabis losing tax revenue in the process.

It is expected that home grow for recreational users will follow the proposed regulations for medical cannabis patients but only after the new market is established.

Read more: California governor signs Ryan’s Law to allow medical cannabis use in hospitals

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CiiTECH announces new CPD-accredited training course

It aims to support and encourage UK pharmacists, physicians and nurses.

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Ciitech academy
The course aims to support and encourage UK pharmacists, physicians and nurses.

Cannabis healthcare company CiiTECH has been awarded CPD accreditation for its academy course, which aims to support and encourage UK pharmacists, physicians and nurses.

CiiTECH’s Cannabis Science and Therapeutics course has had tremendous success after launching the course earlier this year.

The new and innovative course offers an interactive digital platform with a 12 chapter syllabus comprising of medical cannabis, CBD knowledge and information, specifically catered for healthcare professionals in the UK.

Industry experts in the UK could potentially face serious challenges if the trainers in question who are both recommending, and dispensing information are not up to the required standards in the field.

People currently working in the industry, such as pharmacy professionals will feel more secure and confident after taking the course. With such an array of knowledge from the experts, they are better able to recommend, treat and understand benefits and causes of their patients.

Besides all the learning and comprehensive information, simple FAQ questions by patients can be simply downloaded to have at hand as an ongoing reference.

The CBD industry is an extremely fast growing market, people are becoming more and more aware of benefits and common usage. It’s said that by 2025 the market in the UK only will be worth over £3 billion.

This means that clinics and pharmacies must be sourcing trustworthy information to their customers.

This course is aimed at filling an education gap in the market, by covering several points in intricate detail, from plant history to dosing, and patient care. A lot of occupations in the UK require an on going learning process each year, with positive results overtime, leading to a greater service in the industry.

“Through years of experience serving UK customers with our portfolio of CBD brands it was abundantly clear that the level of misinformation was enormous and confusing for everyone involved,” says Clifton Flack, CEO and founder of CiiTECH.

“Formal education is always important but with little to no existence in the UK we could not see a better way to help lead the industry than to establish our own online academy and give healthcare professionals the opportunity to not only learn about cannabis therapeutics but to earn further education points at the same time.”

Flack adds: “With the rise in UK cannabis prescriptions and CiiTECH’s long awaited move into the THC medical cannabis arena, now is the time to increase professional education and it is exactly why we have embarked on this education journey. CiiTECH is fast becoming the UK’s one stop shop for all your cannabis needs; research, education, consumer brands.”

CiiTECH collaborated with Medical Cannabis Mentor to produce the course and prepare it for CPD certification.

Joe Dolce, founder and CEO of Medical Cannabis Mentor, comments: “The course synthesises the most up-to-date scientific research and clinical guidelines in an engaging format to help professionals make informed treatment decisions.”

The course can be found on https://cpduk.co.uk/ or for pricing and registration visit:  https://ciitech.academy

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