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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

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Ireland to fund patient’s medical cannabis up front

Campaigner Vera Twomey described “relief” that her determination has finally paid off.

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Ava Barry medical cannabis patient
Vera Twomey's daughter, Ava Barry has a severe from of epilepsy which is helped by medical cannabis

Campaigner Vera Twomey has described her “relief” as the Irish Government agrees to fund medical cannabis patient’s prescriptions up front.

Eligible medical cannabis patients in Ireland will now have their medication paid for up front, after months of pressure on the Government from campaigners. 

Health Minister Stephen Donnelly announced on Monday 19 July that the refund system for patients who obtain their prescribed cannabis-based products from the Netherlands, will now be replaced by a direct payment system.

The HSE will pay the dispensing pharmacy in the Netherlands directly, rather than the burden falling to the patients and their families, who were then required to apply for a refund.

Vera Twomey, whose daughter Ava Barry, 11, has a severe form of epilepsy known as Dravet syndrome, is among 40 patients who have now been granted an individual ministerial licence to import Bedrocan oil to Ireland.

But the family were paying 10,000 Euros up front every three months for Ava’s prescription and waiting up to five weeks for it to be refunded.

Campaigner Vera Twomey is “delighted” by the news

Twomey, who has four other children, has previously spoken of the huge financial strain this system placed on her family.

Over the last 16 months she has relentlessly called for action, making dozens of phone calls daily to politicians and lobbying ministers on social media with the backing of thousands of supporters in Ireland and across the world.

Twomey, who received a phone call from Ireland’s Prime Minister, Micheál Martin on Monday confirming the news, says she is “delighted” that her determination has finally paid off.

“There’s a sense of relief that we have accomplished this, but also a little bit of shock because we have been trying to resolve it for so long,” she told Cannabis Health.

Twomey’s activism gained national attention in 2017 when she walked from her home in Cork to Leinster House in Dublin to ask former Health Minister Simon Harris to grant access to medical cannabis for her daughter. 

Initially having to travel to the Netherlands to collect the prescription herself, during the pandemic Twomey successfully campaigned to secure the permanent delivery of Bedrocan oils for Ava and other patients.

Now she says she is looking forward to focusing on her family and putting the phone down for a while.

“I don’t think anybody who has gone through this fight, seeing the injustice that we have had to deal with could ever walk away,” she said.

“But at the same time, I’ve made a lot of sacrifices and for the moment at least, I need to give 100 percent to my other children, to do normal things and be a family.”

But the fight in Ireland isn’t over.

The Irish Government announced the provision of funding for the Medical Cannabis Access Programme (MCAP) in January – almost two years after it was introduced – but only four low dose cannabis-based medicines are covered by the programme, for people living with one of three qualifying conditions.

“There are other issues – we still need expansion and improvement in medical cannabis access, the journey is over by any means, but we’re at the beginning and getting Bedrocan recognised as a medicine that is funded up front is very important.

“I think the Irish are actually miles ahead of the British on this one and I hope [politicians] will take notice and catch up.” 

She added: “The greatest gift you’ll ever receive is to lose your fear, then you can accomplish anything with focus and determination.

“If you have the determination to keep going you will get there. It’s not going to be easy, they are not going to make it easy but it can be done.”

Patients eligible for the direct payment system are those suffering from one of three stated conditions; spasticity associated with multiple sclerosis, intractable nausea and vomiting associated with chemotherapy and severe, refractory (treatment-resistant) epilepsy. 

The HSE says it will be contacting patients directly.

Health Minister, Mr Donnelly, commented: “I am delighted that the HSE and Transvaal Apotheek in the Netherlands are implementing a new process which will give peace of mind to the seventeen patients and their families who until now have been using the refund process.”

 

 

 

 

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Kanabo’s cannabis vaporiser for metered dosing launches in UK

The VapePod will give thousands of UK patients access to pain relief in a metered dose.

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Kanabo cannabis Vapepod
The VapePod can administer a measured dose of cannabis extract

Cannabis company Kanabo’s new extract formula and vaporiser will give thousands of UK patients access to pain relief in a metered dose.

UK patients will be the first in Europe to have access to Kanabo’s vaporiser, the VapePod, and its new extract formula when is it delivered later this month.

The deal, in conjunction with LYPHE Group, will see patient’s of LYPHE Group’s ecosystem, including The Medical Cannabis Clinic and Dispensary Green, able to access the VapePod under the brand name NOIDECS.

Under the agreement, PharmaCann and Kanabo established a customised production line for Kanabo’s VapePods cartridges.

An alternative to cannabis flower

The VapePod is a medical-grade, handheld vaporiser which enables accurate and precise micro doses of cannabis extract, dispensing 1mg of formula for each inhalation.

This will benefit to patients as inhaling extracts rather than tinctures and oils allows for faster onset and higher bioavailability.

It will also allow clinicians to more confidently prescribe and monitor a patient’s dosage, as well as providing more accurate patient data.

Previously, cannabis patients in the UK have only been able to access medical cannabis dry flower and oil tinctures for which the majority of patients consume via inhalation due to fast onset time.

Kanabo’s medical line aims to enable patients to move away from the harmful act of smoking medical cannabis flowers as they can now take their medicine without inhaling soot, tar and carcinogens into the lungs.

Kanabo founder, Avihu Tamir

Avihu Tamir, Kanabo’s CEO, said: “The VapePod is a world first allowing specialist consultants to prescribe a metered dose of medicinal cannabis that is healthier for patients than the alternative, which is typically smoking.

“Medical cannabis is a safer alternative to the conventional opiate solutions and other pain management treatments. This announcement ensures that thousands of UK patients have access to the most effective medicinal cannabis delivery system.

“The fact that the VapePod gives exactly 1mg on every inhalation is crucial for GPs because they can prescribe an exact dose which they haven’t been able to do before. For patients who want the similarity to smoking but know they are not inhaling soot and tar. There’s also the bioavailability factor too.

“The reason GPs haven’t been prescribing is the issue of dosing and flowers – they don’t feel comfortable asking patients to smoke. With Kanabo, they can prescribe exact dosing in a safe and consistent way.”

The medical extract formula, which is based on the Israeli medical cannabis pharmacopoeia as a recommendation for the treatment of pain management, has a purity of 70 percent THC with 15 percent minor cannabinoids and terpenes.

Earlier this year Kanabo became the second cannabis company to list on the London Stock Exchange.

Dean Friday, LYPHE’s CEO commented: “Kanabo are experts in novel delivery with their VapePod greatly improving onset times, and for our chronic pain patients we now have an alternative to flower vaporisation. This is the start of a revolution in medical cannabis application and we are delighted to be supplying it under the NOIDECS brand.”

 

 

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Mental health

Cancer survivors turn to cannabis for physical and mental health – study

Cancer survivors are more likely to use cannabis to help pain, anxiety, sleep and nausea. 

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cancer
Cancer survivors are more likely to use cannabis to help pain, anxiety, sleep and nausea. 

Cancer survivors are frequently using cannabis to manage physical and mental health symptoms, says a new study.

Research from the US indicates that cancer survivors are more likely to use cannabis for symptoms such as pain, anxiety, trouble sleeping and nausea. 

A team of investigators analysed results from a Covid-19 cannabis health study to examine changes to cannabis use, methods of cannabis delivery, and coping strategies among cancer survivors since the pandemic.

They found that individuals with a history of cancer are more likely to report cannabis use to manage mental health and pain symptoms.

This group of people were also more likely to report fear of a Covid-19 diagnosis, compared to adults without a history of cancer.

Data was collected from 158 responses between 21 March 2020 and 23 March 2021, from cancer survivors who identified as medicinal cannabis users.

These were then compared to medicinal cannabis users without a history of cancer of the same age.

According to the study, cancer survivors were more likely to report using cannabis as a way of managing nausea/vomiting, headaches or migraines, seizures, sleep problems or as an appetite stimulant.

Specifically, self-reported symptoms most frequently managed by medicinal cannabis among respondents included anxiety and pain. 

Sixty one percent of respondents with a history of cancer used cannabis to manage anxiety symptoms and 54 percent for chronic pain.

Forty eight percent said they used it to manage depressive symptoms and 25 percent for PTSD, while smaller numbers used it for symptoms of another autoimmune disease, and irritable bowel syndrome. 

While there were no differences in how often they used cannabis or their method of administration, cancer survivors were “more likely to have an advanced supply of cannabis”. 

The findings support the need for more conversations between doctors and their patients about the use of cannabis, say those behind the study.

The authors concluded: “Overall, we observed that cancer survivors are frequently reporting the use of cannabis to manage both physical and mental health symptoms associated with their cancer diagnosis and that cancer survivors are more likely to report fear of a Covid-19 diagnosis compared to those without a history of cancer. 

“Given the frequency of mental and physical health symptoms reported among cancer survivors during the Covid-19 pandemic period, clinician–patient interactions should include questions around cannabis use, particularly those with a history of cancer.”

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