Introduction

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

Cannabinoids

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:

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
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
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

#ACureCantWait

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

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