Those of you who are aware of our son William’s story will know how, after going through all treatment options available on the NHS, his brain tumour shrank by two thirds after we started him on Cannabidiol (CBD) and put him on a Ketogenic Diet – this was after doctors said he had only a few months left to live – that was over two years ago…
William continues to do well although we are ever-mindful of the fact that, according to the statistics, he should not be alive. Whilst the approaches we are currently using appear to be keeping his tumour stable, we can’t be sure of exactly why.
We successfully proposed and helped fund a research project into CBD and William’s tumour type, ependymoma, and research has started into the Ketogenic Diet…
However, for many parents this still isn’t enough (the Diet is difficult to follow and the right CBD can be hard to obtain). Clinical trials are required in order to persuade more parents who are desperate to help save their child but see anecdotal stories like ours and think it’s too good to be true.
We’re also scared of what might happen if Williams’s tumour starts to grow again since we’ve ran out of NHS options.
In order to progress to clinical trials a significant amount of “pre-clinical” research needs to be done on a particular cancer type. The CBD project is a significant first step but further research is needed, especially into other Cannabinoids (CBD is only one of many Cannabinoids found in the cannabis plant, some of which have been found to be effective on other cancers in the laboratory). There is also much more work that needs to be done into the Ketogenic Diet.
The Children’s Brain Tumour Research Centre (CBTRC), who are carrying out the CBD project, are well placed to carry out such research. Once the required amount of pre-clinical research has been done, centres like this can then apply to the likes of Cancer Research UK for funding into clinical trials.
As well as giving other parents the opportunity to experience what we have, we’re hoping such research will also give more options for William in the future.
How You Can Help
CBTRC have agreed to put all proceeds raised through Make William Well towards further research into Cannabinoids and/ or Ketogenic Diet.
Every penny they receive will go directly towards speeding up the rate at which this important research is carried out, bring forward the day when the first clinical trial into either of these approaches and a childhood brain tumour can start to happen.
For the remainder of 2018, my employer, Colas, has very generously agreed to direct its fundraising efforts towards raising money for the CBTRC through Make William Well.
The campaign is by no means limited solely towards Colas employees – I’m just honored to have such significant support in helping such an important area of research, not just for William but also for the countless numbers of children affected by this wicked disease and anyone else who may also benefit as a result.
We’ve only just started this campaign and will be organising several fundraising events between now and the end of the 2018 – if you have any ideas, please get in touch – in the meantime, we’ve put together a Just Giving Page where you can donate directly, and which will be updated to include all off-line donations.
Please give generously… there’s also a Team Just Giving Page to which you can link your own fundraising campaign if you’d like to set one up and fund-raise online for us.
Lastly for now, there’s a Facebook Page you can follow to keep up with all the latest campaign updates etc. or you can subscribe to our blog by entering your email address below.