2022 Stable Scan

It was a bit later than scheduled but William had another routine scan yesterday and his tumour was found to be stable. He’s now being put on a 6 month schedule…

For those not aware, the gold cancer ribbon is the internationally recognised symbol for childhood cancer, one I wear regularly along with my “cancer bands” (string bracelets purchased from Clic Sargent, now Young Lives versus Cancer – one of many cancer charities well worth supporting – link on our Support Page)

7 Cannabis-based Products we need YOUR help with

Not long now until we launch our first product at http://www.cannaelements.co.uk which will be a cream containing cannabidiol (CBD). It’s a great product and we’re sure it will be a hit… so much so we’re already looking to expand on our range of products containing cannabinoids.

We have been working on a few options but to help us decide which ones to go with we need your help… please let us know which ones you’d like to see us start selling first by clicking on the link below:

https://forms.gle/fTajkp9oPAAUm1Gb7

(before anyone comments, CBG is not a typo – it stands for cannabigerol which is another cannabinoid like CBD but has different properties – give it a quick search online and you’ll see why we’re so excited about the prospect of selling it).

Cancer Research Article on Cannabis

Interesting article from Cancer Research this month Cannabis, cannabinoids and cancer – the evidence so far – “the take-home message is that different cannabinoids seem to have different effects on various cancer types”.

This is what I was told 7 years ago and is the reason I’ve been fundraising and campaigning so hard for specific cannabinoids to be tested on childhood brain tumours – why can’t kids get first dibs on a new treatment for once?!?

What’s really frustrating is that scientists have know about the different cannabinoid effect on different cancers issue long before I found out and yet we’re still in this position! Please support us however you can to have kids benefit first from and anti cancer effects found in the cannabis plant

Brand Launch

We’re so excited we couldn’t keep it quite any longer… despite not having any products to sell yet, we wanted to let people know we’ve started our own company Canna Elements Ltd which we’re using to launch our very own brand of cannabis-based products. Those of you who know our story will be aware of how passionate we have been with Make William Well since 2016 in terms of fighting for more research to be carried out into non-conventional approaches such as the use of cannabinoids to treat childhood cancer.

After asking so much of our friends and family and having fundraised enough money and spread enough awareness for research projects to not only start but in some cases finish, we decided the next step in our fight for more research and awareness is for us to enter a market with which we have been so familiar over the last five years. With that in mind we’re happy to announce that £1 per product sold will go towards furthering the aims of Make William Well, supporting research into childhood cancers.

So, although we’re no longer asking for people to sponsor the hair-brained fundraising activities we have put on in recent years, what we’d really appreciate is for people to get behind our new venture – please like and share our social media posts as well as our story in general. We’d also really appreciate any feedback – on the brand or on what products you think we should be looking to sell. With your support we can take our research funding and awareness to the next level….

Cannabinoid Research News

Nice to see this drop through the letter box… Couldn’t have imagined seeing anything like this kind of article 5 years ago being published by such a reputable charity.

Already feel like one hurdle has been jumped over as research into cannabinoids and brain tumours is now being recognised as legitimate and not just and excuse to get cannabis legalised which is what it felt like we were being accused of back in the day when we first started fundraising and campaigning for more research…

If you’d like to make a donation to The Brain Tumour Charity, please consider doing it via our supporter page

Cannabinoid Clinical Trial

Absolutely thrilled to be able to share this – back in 2016 very few people had even heard of CBD and anyone who associated the words cannabis and medicine was more likely than not derided as a hippy wanting to legalise pot.

At Make William Well we proposed and helped fund the first ever research paper into cannabinoids and childhood brain tumours back in 2017 and were told at the time it would likely be a decade before a clinical trial could happen…

How things have changed! We started supporting The Brain Tumour Charity a couple of years ago since we wanted ALL cannabinoids (not just CBD) to be researched for their effects on brain tumours and were told personally by their CEO Sarah Lindsell that the charity would do everything possible to make this happen…

Even then I was sceptical… until the start of the year when I was told in confidence about this. Ok, it’s not focussing on childhood brain tumours but hey, I’m still blown away.

To have the guts to push for this in the face of a much biased public when it comes to medicinal cannabis is so brave and just goes to prove how the charity does exactly what is says it will do – speaks to those affected by a brain tumour and takes action

Click here for details

2021 Stable Scan

If you’ve followed our page for a while you may have noticed that we’re not posting much about our son William who is the inspiration for Make William Well. This is a deliberate decision since we want to keep our family life separate from our campaigning/ fundraising efforts.

However, we thought some of our followers would like to know the results of William’s latest scan which showed no progression, as it has since his third surgery in early 2019. We’ll continue to give annual updates although for the reason above we’ll not be announcing the results of each scan.

CBD, THC and Childhood Brain Tumour Research Paper

It has been difficult thinking of how to write this post, which a large part of me, for many reasons, want’s not to write, so I’ll start with a bit of background.

When it became clear, over three years ago, that The Children’s Brain Tumour Research Centre in Nottingham wouldn’t consider carrying out research on William’s tumour type (ependymoma) and the cannabinoid THC in the UK we looked elsewhere and found out that there was a research centre in Australia which was already looking into another childhood brain tumour type and the effect of cannabinoids, including THC. By introducing them to the team at Nottingham, who have expertise in ependymoma, it was possible to have William’s tumour type included in the study which has now been published…

We were aware all along that “following the science” wouldn’t necessarily give us the answers we “wanted” but at the same time we just wanted to understand the truth behind whether cannabinoids “work” on childhood brain tumours – you can read the full article by clicking here

From this research it does not appear that cannabinoids have any anti-cancer effects on childhood brain cancers. But the research was only tested on high risk types of medulloblastoma and ependymoma, identified by the expression of specific genes – without doing the research it’s not possible to say what the effect of cannabinoids would be on other genetic sub-types.

There is, however, strong evidence to suggest that cannabinoids have some effect against adult glioblastoma cells so clinical trials in these types of brain cancers should still take place.

We have long-suspected, though, that it’s a combination of cannabinoids as well as the ketogenic diet, or even just the diet, which have helped William, perhaps alongside conventional treatments. If anything we hope that this research emphasises the fact that cannabinoids are well tolerated, in particular alongside conventional therapies although one cannot completely rule out the potential psychological side effects, particularly in children, as identified in this article. 

We also hope that parents will consider diet more in terms of it playing a potentially important role in combating tumours. After all, a research study has already demonstrated a link between ependymoma and anti-cancer effects of the diet – click here to see the article.

We’re Back…

As with many other charities, organisations, supporter groups etc., 2020 certainly knocked us at Make William Well off our stride as those of you who follow us may have noticed by the lack of blog posts over the last year.

In 2021 though we’re hoping to get back on track and if all goes to plan we’ll have a few exciting announcements to make – we may not have had much to say recently but behind the scenes a lot has been happening. 

In the meantime we’ve treated our website to a bit of a makeover – we now hope it will be much more easy to navigate.

Much of our progress to date can be found in our blog – if you don’t want to risk missing out on a blog post then why not submit your email using the box to the side or below (depending on what you’re using to read this)?

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
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.