CBD Project – Further Developments

Taken from a report produced by The University of Nottingham – original can be downloaded here

Is there a role for Cannabidiol in the treatment of Children’s Brain Tumours?

Project Update November 2019

Symposium 2019 Group Shot
Cannabinoid Funders, and Researchers at The Brain Tumour Summit Event in November 2019, Nottingham.
L to R: Stephen Frost (Parent and founder of Make William Well), Dr Lisa Storer (Senior Experimental Officer working on the project), Emma Pearson (University of Nottingham, Senior Development Manager (Health)), Professor Richard Grundy (Principal Investigator on the Cannabinoid Research Study), Mary and Robbie Burton (Astro Brain Tumour Fund)

Make William Well has generously supported a research project at the Children’s Brain Tumour Research Centre examining “Is there a role for Cannabidiol in the treatment of Children’s Brain Tumours”.


We know that Cannabidiol (CBD) is widely used by brain tumour patients, sometimes with considerable success. But, we need to objectively understand how CBD affects the cells, and why the results patients and families are reporting occur. This knowledge is essential in order to determine what the therapeutic dose of CBD might be. Without this, Clinicians or families may inadvertently be too conservative or liberal in their dosage, and not achieve optimum results for the patient.

Laboratory Studies

George Lockwood, Research Technician on the CBD project

We last provided an update to Make William Well in July 2019. Since our last update, 3 studies that we highlighted have now been concluded. These are:


  1. Examining to what extent the presence or absence of oxygen (the latter mimics the conditions within the brain) in tumour cells treated with CBD, has on markers within the cell which indicate the beginning of the process of cell death.
  2. Some patients are taking cannabis oil as an adjuvant therapy for their brain tumour. The treatment is to take the oil for CBD 3 days on, 3 days off. It is not yet understood how this pulsed action affects tumour cells. We have replicated this treatment on our laboratory cells, to understand what impact it has on the cells.
  3. Investigated in further detail how CBD affects the cells receptors, so that it can be better understood the effect the drug has on tumour cells.

This research could have considerable clinical benefits, and therefore it is very important that any conclusions we draw are able to stand up to international scientific scrutiny. To achieve this, we are now in the process of detailed examining all of our data from the project. This process takes several months, and we expect to make firm conclusions in Spring 2020.

Once completed, we will submit our results for scientific publication. With this in mind, we are submitting abstracts to major scientific conferences, as these events are a key route to disseminating the knowledge we have gained to an international audience of scientists and clinicians.

International Knowledge Sharing

Although our laboratory phase has currently moved to analysis, we are still developing our international collaborators and planning the next stage of our studies.

Professor Richard Grundy visited The University of Western Australia in September to learn first-hand about their CBD research studies focussing on medullblastoma. Professor Grundy spent time with Dr Clara Andradas Arias, PhD Post-doctoral Research Officer, Telethon Kids Institute, Perth, Western Australia. Clara is an international Post-doctoral Researcher in the Brain Tumour Research Lab at Telethon Kids Institute. She completed her PhD in Spain, at the Complutense University of Madrid, in a world-leading laboratory focused on the role of the endocannabinoid system in cancer physiopathology and the use of cannabinoids as potential anti-tumour agents. Clara continued her career at MD Anderson Cancer Centre Madrid, identifying alternative therapies for HER2+ breast cancer patients that are resistant to standard therapy. In 2017, she moved to Australia to join the Brain Tumour Lab at Telethon Kids Institute, where their search focuses on understanding paediatric brain tumours biology and finding more effective treatments to improve survival rates and quality of life for patients. Specifically, Clara works in a collaborative project with Zelda Therapeutics, studying the potential anti-cancer effects of cannabinoids in childhood brain tumours. Clara has a broad expertise in. cancer signalling, pre-clinical cancer models, drug therapy and cannabinoid research.

The CBTRC’s CBD research has focussed on ependymoma, and Paediatric High-Grade Gliomas, and this international collaboration has been an invaluable opportunity to share data into how CBD affects cells in other types of paediatric tumours, with the data to date looking consistent across both laboratories. To share the knowledge more widely, Clara visited Nottingham in October and presented to researchers in Medicine, Pharmacy, and paediatric oncology Clinicians and Nurses.

Further Studies

Whilst our current focus is on analysis, we know there is more research that needs to be conducted to truly understand CBD and how it can most effectively be used to treat paediatric brain tumours. We have recently applied for two further MSc students to join us, potentially in February 2020. These projects will focus on further understanding the impact of the current adjuvant usage of CBD by patients on tumour cells, and further understanding the processes and changes that CBD had on cells in conditions with and without oxygen. Combined, this will provide further insight into how CBD interacts with tumours. Meanwhile, to start taking this research to patients, Dr Madhumita Dandapani, Clinical Associate Professor and Consultant Paediatric Neuro oncologist at Nottingham University Hospitals Trust is developing a Ketogenic Diet & CBD Clinical Trial application, for a funding application in 2020.

Once again, we would like to thank the supporters of Make William Well for their significant contribution allowing us to study the impact of an emerging therapy for children with brain tumours, and how it can be used for maximum impact, with minimum harm.

UK Paediatric Brain Tumour Symposium – REVIEW



So, a week last Wednesday the 2019 UK Paediatric Brain Tumour Symposium took place in Nottingham.  The venue was different to last year and unfortunately (well, fortunately for camera-shy yours truly) it was not recorded this time

It was great meeting other parents (one of whom came all the way from America) as well as others like Mary (pictured on the right with her husband) from Astro Brain Tumour Fund which gave £45,000 towards the CBD Project

In this blog I’ll cover the presentation on Cannabinoids, my own presentation and some of the others which were on topics such as the Ketogenic Diet, Proton Beam Therapy and Acceptance & Commitment Therapy as well as new ways of 3D Modelling Tumours


RG Presentation

Prof Grundy (world renowned childhood brain tumour specialist at the Children’s Brain Tumour Research Centre and pictured third from right in the top photo) gave a brief overview of the history of medicinal cannabis and then went on to talk about the results of the CBD Project we proposed and helped fund – most of the data can be found here

Although no new information was given as part of the main presentation (see Q&A below) it was great to hear him say that it was certainly worthwhile looking into CBD and that they’d like to progress on to Gold Standard Clinical Trials

Prof Grundy also pointed to the unknown effects on the developing brain and illegality in terms of why other cannabinoids such as THC weren’t being looked into

My personal thoughts on these last few points are:

  1. Why do clinical trials have to be Gold Standard?  They take too long, are too expensive and clearly haven’t been very good in terms of coming up with effective treatments for childhood brain tumours
  2. The law was changed last year and THC is now legally available on prescription albeit privately and at significant cost and with minimal clinical support
  3. Most conventional treatments cause significant mental and/ or physical damage (and may even cause secondary cancers) – how can it be so unimaginable to consider giving a drug which MAY have effects on the developing brain?

What we at Make William Well are calling for is for Adaptive Clinical Trials (which are far cheaper and produce faster results) to be carried out on a multitude of cannabinoids – this way more children could be given the opportunity of sooner access to paid-for quality assured medicinal cannabis products under close clinical supervision

I believe the current system of Gold Standard trials has failed our children – only one drug has EVER been specifically developed to treat a childhood brain tumour.  We’re still resorting to hand-me-down treatments from adult cancers (which are very different biologically to their childhood equivalents) and are CUTTING (via surgery), BURNING (via radiotherapy) and POISENING (via chemotherapy) our children with decades old inappropriate approaches when Cannabinoids are starting to be shown to be potentially effective but are currently a long way off being prescribed on the NHS

I believe there needs to be a sea-change in the way we go about looking for childhood cancer cures and I believe that pushing for Adaptive Clinical Trials is the way forward

You can help – please consider making a donation to our Brain Tumour Charity Supporter Group – you could even organise an event like the parents of one child who raised over £3,000 for us in their son’s memory

The CBD Project might never have happened without your support – together we can make Adaptive Clinical Trials happen NOW or wait years for Traditional Clinical Trials to yield results – it really is a stark at that


Q&A – answers to some of the questions that were asked after the presentation:

  • Can CBD be used alongside Chemotherapy?
    • Chemotherapy works in different ways to CBD so there shouldn’t be any adverse effects (I would say always check with your consultant and be honest about exactly what you are using)
  • Has an effective dosage been established?
    •  A figure of 50 was given although I’m currently awaiting a response in relation to whether this could be translated into a mg per kg figure
  • What’s the best route of administration?
    • Nasal spray was stipulated as probably being the best route

My Presentation

SF Presentation

I really appreciate the positive feedback I’ve had so far but I know my presentation could have gone a lot smoother… there’s not much that could have prepared me for a sea of faces reacting to me telling them about the two and a half years from diagnosis to hospice referral…

I’ve uploaded a copy of my presentation with notes which can be found here although most of what I spoke about is available on our website

Other Presentations

BT Logo

Khadijha Sundus (centre in the picture) from the Brains Trust (which organised the Symposium) gave an impassioned presentation on the work of their charity and how people can go about fundraising for them


Lisa Storer (pictured third from left) gave a presentation around the Ketogenic Diet and spoke about some of the research the team at Nottingham have been doing into how certain brain tumours may be more susceptible to being starved of glucose than others, especially when administered alongside radiotherapy


Dr Sophie Thomas gave a presentation on Acceptance & Commitment Therapy and spoke about a trial they’re looking to start next year aimed at 11 to 24 year olds – get in touch if you’re interested in having your child take part


Nic Woulters, whose mother presented at last years Symposium, gave an inspiring presentation from the perspective of a teenage brain tumour survivor


Dr Franziska Linke gave a presentation on Modelling Medulloblastoma in 3D and was able to demonstrate how this new method for researching the effects of chemotherapy on cancer cells can be more accurate in comparison to 2D methods


Amy Davies from the Christie Proton School, Manchester, gave a presentation on Proton Beam Therapy. Until recently this type of radiotherapy was only available abroad and, although it is supposedly no better or worse than “standard” Photon Beam Therapy at killing cancer cells, less radiotherapy is delivered to other parts of the brain resulting in fewer side effects

It was interesting to hear how safe this technology is being purported to be versus how it was described to us not long ago when it was only available abroad whereby we were told that many of the side and long term effects were not fully understood… I brought this up and was told that in the UK much more time is spent on planning in order to avoid such complications…

I only remembered afterwards about being told a couple of years ago how Proton Beam Therapy hadn’t gone through proper Gold Standard Clinical Trials in comparison with Photon Beam Therapy…


Hugh Adams from Brain Tumour Research presented a SWOT analysis on spreading awareness of the need for more research into brain tumours.  It would be amazing if we could work together to help achieve the goals above…


Please note, this blog content is just my own interpretation from the symposium as a non-medical professional.  Please keep your medical team fully advised of what you are doing

Brain Tumour Symposium

Less than a week to go until the second ever UK Paediatric Brain Tumour Symposium and I’m still struggling to comprehend the fact that I’ll be sharing a stage with the likes of Prof’s Grundy and O’Sullivan, both of whom I have the utmost respect for

Although I have spoken previously about our journey, I am unbelievably nervous about the prospect of speaking in front of an audience of seventy people which will include parents as well as medical professionals

Hopefully my contribution will go some way towards making clinical trials into cannabinoids and childhood brain tumours happen sooner – if you would like to help then please consider making  donation to our Supporter Group


UK Paediatric Brian Tumour Symposium 2019

I probably wouldn’t have been up for this had William’s scan not been stable but I’m happy to say I’ll be presenting at this year’s UK Paediatric Brain Tumour Symposium in Nottingham

I attended the first ever one held last year and it was really informative.  This year topics include cannabinoids, the ketogenic diet and proton beam therapy so I guess it’s quite appropriate my being there to talk about William’s journey

I’ll post again nearer the time although there are limited places (it’s free to attend for parents and caregivers) so if you want to come along I suggest booking your place now by clicking here

Hope to see some of you there, Steve (William’s dad)


Stable Scan

Happy to be able to report another stable scan 6 months on from William’s third surgery

Wee man is back into his daily school routine and continuing to dumfound us all.  Chemo is still taking it’s toll although we’re hoping that there are synergistic effects happening between it and the alternatives we are continuing to use

Thank you again to all of you for your support – we genuinely don’t think we’d be where we are today without the generosity we have been shown

We’ll continue to campaign and fundraise so that other kids can benefit from the journey William has been through – watch this space for details of an event at which you’d be able to hear first had about our story…

Different Cannabinoids and Different Cancers

We have suspected for a while that different cannabinoids (CBD, THC etc.) have different effects on different types of cancer and this article supports that theory (it has been added it to the list of Academic Research Papers that we have been keeping on Cannabinoids, the Ketogenic Diet and Cancer)

We were over the moon when the Children’s Brain Tumour Research Centre agreed to carry out the Research Project into CBD and Childhood Brain Tumours that we proposed and helped fund – our suspicion that other cannabinoids might be important lead to our asking The Brain Tumour Charity if they would be willing to support research into other cannabinoids and that was the basis for why we agreed to start our Supporter Group to raise money for them

The full article can currently be found here


Generous Donation in Memory of Tommy

As well as to raise awareness and money for more research into childhood brain tumours, we set up Make William Well to provide a resource for other families going through this journey

As such, we receive regular requests for help and we do all we are able to. One of the hardest things about this, on many levels, is hearing back from parents who tell us that their child didn’t make it

We recently received such news from Todd and Becky, the parents of a young boy called Tommy, who had reached out to us previously for advice

On this occasion though they also told us about a fundraiser they had organised originally in Tommy’s memory and then also in memory of Michael Shiel (a dedicated supporter of theirs whose initial idea it had been to organise the fundraiser)

They managed to raise a phenomenal £3,044.48

We confirmed that 100% of all money donated through our Supporter Group is ring-fenced by The Brain Tumour Charity for research specifically into childhood brain tumours and this week the money was paid into our account

Tommy was an extremely brave boy, smiled ‘till the end, never let anything get him down and made his mummy and daddy proud beyond this world

We are humbled by how Tommy dealt with this wicked disease and in awe of his parents for holding such an event in his memory. We’re also grateful beyond words that they chose to donate it via our Supporter Group

If you would like to make a one-off donation or even set up something regular, please visit our Supporter Group Page and be generous so that children like Tommy stand a better chance

Interview with TheExtract.co.uk

It has never been easy talking about what William has been through to journalists, especially since we have been misinterpreted by the press in the past, although I’m happy to say I’ve been fairly represented here

If you’d like to help us in our battle against childhood brain tumours, please click here

For signs and symptoms, as I mention in the interview, please visit headsmart.org.uk

To read the article click here or on the image below

TheExtract Interview Post


A massive Thank You to all those who have liked our Facebook Page and stuck with it!

Every Like makes us feel more and more like what we’re doing is worthwhile and gives us the confidence to continue sharing our story and trying to help William and other kids benefit from what he has been through

So, genuinely, thank you so much for sticking with us – to help us celebrate it would be awesome if anyone who hasn’t already donated would support us in helping children with brain tumours by clicking here

1000 Likes Post

Kielder Day Out with The Brain Tumour Charity

We had an awesome time with The Brain Tumour Charity yesterday on one of their Family Days (we attended something similar in 2017 and in 2018 they took us up in a helicopter above Silverstone!)

This year William, Charlotte, Mum and Me spent the day at the Calvert Trust, Kielder and enjoyed a go at…

An indoor climbing wall (still can’t believe he managed to make it all the way to the top!)

A zip-line!!! (video to follow on Facebook…)

 A King Swing – puzzling name but you’ll understand when you see the Facebook video…


Can’t begin to say how much of an awesome organisation The Brain Tumour Charity is – aside from being so supporting to patients they’re extremely forward thinking when it comes to research (see Brains Matrix) and innovative when it comes to patients learning from other patients (see Brian) which are just some of the reasons we are so proud to be a Supporter Group

That’s also why this year we’ll be putting ourselves through hell by walking 84 miles across England along Hadrian’s Wall in just three days carrying all our own camping gear PLUS I’ll doing the Great North Run just two weeks later!

So, PLEASE make some of this pain worthwhile by sponsoring us or attending our Fundraiser in Newcastle on Bank Holiday Monday 26th August – all money raised will be spent on helping children like William with brain tumours

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