Exciting Developments

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I’m really exited to be able to announce a number of things in this post:

  • The Brain Tumour Charity have confirmed that research into cannabis and childhood brain tumours will be the focus of our fundraising efforts for them.  There’s a real chance that this will lead to imminent clinical trials – we just need your support to help make this happen sooner
  • Back when we were struggling to buy our first bottle of CBD, our local Round Table took no time agreeing to pay for it – having recently revived our local Whitley Bay Round Table, primarily to raise money to support local causes, it was agreed that the Hadrian’s Wall Challenge will be the first sponsored event we support
  • We have our first business supporter, Evan’s Bistro – one of their owners will be taking part in the challenge and they just happen to own a restaurant at Segedunum – the official end of Hadrian’s Wall.  Needless to say celebrations will be involved – watch this space for further information…

If you would like to support us then please visit our Just Giving Page

There are still places on the challenge if you’d like to help support us – we’ll be setting out on 24th August

Wee Hero Meets His Hero

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Hero’s Super Hero

When all of this started we dared not dream we’d be able to get William to Disneyland, especially with complications arising from further treatment, although thanks to some greatly appreciated generosity we arrived back from the holiday of a lifetime last week.

By far the highlight was seeing William meet his superhero Spiderman who was just awesome – he even showed him how to shoot spiderwebs…

He also managed to have a go on a rollercoaster for the first time…

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He may have looked terrified although by the end he was a fan…

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…although the prospect of a Buzz Lightyear was a good motivator to get him to try new things…

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A trip to Disney, though, wouldn’t be complete without checking in on a couple of other characters…

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And with all the excitement can I be blamed for stealing a selfie with the main man?!?

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With all of the awesome rides available though, William’s favourite was the carousel which we must have taken him on about 4 times…

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In all seriousness though, I’m so appreciative to Disneyland for their disabled policy – although William can walk short distances, he is otherwise confined to his oversize buggy which is in effect his wheelchair and as a result we were able to bypass many queues.  It may look to some people who have queued for a long time like they are being pushed in front of for an unjustified reason – I just hope that the people who threw dagger-eyes at us at the time never have to experience what we have…

Aside from that, William really enjoyed the rest of Frontier Land…

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…getting stuck into the playgrounds…

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…enjoying some of the more traditional Disney fayre…

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And deciding which Lego set he would like to buy…

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We were of course able to appreciate much more of what Disneyland was able to offer.  We’re just hopeful that William’s next scan, due at the end of this month, suggests that a return visit will be possible.

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We are now a Supporter Group of The Brain Tumour Charity

We’re delighted to be able to announce that Make William Well has become a Supporter Group of The Brain Tumour Charity

Becoming a Supporter Group means that we can raise money for a cause we believe in without having to register as a charity – The Brain Tumour Charity has agreed to ringfence 100% of any money we raise though our donations page for use on research we want them to spend it on

Things have come a long way since we first proposed carrying research into cannabinoids over two years ago and we are extremely grateful to the Children’s Brain Tumour Research Centre for agreeing to write the cannabidiol research proposal which we pushed so hard for and helped raise funding and awareness to make happen

Our hope now is that this research can be built upon such that parents aren’t having to spend thousands of pounds and in some cases break the law on something that, provided it is found to be effective, should be available on NHS prescription

Please visit our Brain Tumour Charity webpage (which contains links to other useful pages on their website) and consider making at donation by clicking here

Also, watch this space for a couple of exciting developments we’ve got in the pipeline…

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British Medical Journal – Article on History of Medicinal Cannabis

When many people hear the words “medicinal cannabis” they automatically associate the term with phrases like “backdoor legalization for recreational use” and assume it has no actual medicinal value

Having been thrust into the world of medicinal cannabis I came across not only anecdotal stories of people being effectively treated with various cannabinoids (compounds found within the cannabis plant), but numerous academic studies on how they can be effective on various conditions, as well as cannabis based products made by large pharmaceutical companies

I also came across suggestions as to why the US criminalised cannabis in the early 1900’s and used scare stories to vilify its use in order to save the jobs of those working for what is now called the Drug Enforcement Agency (DEA).  I read these stories with a high degree of scepticism, whilst at the same time believing things like ‘there is no doubt that cannabis causes schizophrenia’…

The more I read, though, the more the “conspiracy stories” about the covering up of the value of medicinal cannabis started to make sense.  I learned more about cannabis and how different cannabinoids can have different effects on different disorders – how some, for example CBD can actually counteract the psychoactive effects of THC, another cannabinoid.

Given this I read with great interest an article by a professor of neuropsychopharmacology and psychiatrist at Imperial College London, David Nutt, particularly since it was published in such a prestigious medical journal – the British Medical Journal (BMJ), which in just three pages gives validity to many of the conclusions I’d come to.

My reason for writing this blog post is to persuade people to see through the illegalities to the medical possibilities of cannabis in the hope that misinformed biases can be overcome and much needed research into cannabinoids and childhood brain tumours can be carried out.

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Helicopter Ride Photos

Nice to see the wee man feature in an advert for a family event organised by The Brain Tumour Charity.

The picture was taken at the Family Day Helicopter Ride event we attended last year and we were recently sent some other pictures taken on the day…

William is doing well at the moment. So far so good with the chemo and other approaches. Fingers crossed the results of his tumour analysis will come back soon with some positive news on other approaches we could consider.

Hope soon to be able to announce exciting news about research/ fundraising. Please get in touch if you’ll be taking part in an event you could use to help us raise money – if not you could always take part in our Hadrian’s Wall Challenge, now re-scheduled for August!

Hadrian’s Wall Walk

It might not come as a surprise to those who keep up to date with our blog but we’ve decided to put the Hadrian’s Wall Challenge back to the second bank holiday in August.

Is going to be an interesting period for me personally since I also managed to secure a place in the Great North Run which is a couple of weeks later!

The timing does, however, mean that we’ve got more time to find something worthwhile to raise money for – less than three months left ’till the end of the CBD Research Project… fingers crossed there’ll be something off the back of that we can support.

If you’re interested in taking part, please visit our Facebook Event Page and/or message me and I’ll send you a link to the WhatsApp group we’ve started.

Next Steps

Turns out there was some tumour left after the surgery so the risk of radiotherapy, given that he’s already had it previously…

Anyway, we’ve now started metronomic chemotherapy which is low dosage hence has less risk of toxicity.

Still continuing our other approaches which our consultant says will be fine when given alongside the conventional treatments…

Hopeful noises coming out of Nottingham in relation to cannabidiol research – hope to be able to report something soon, perhaps some more research people can help make happen soon…

In the meantime we’re continuing to make precious memories – wee man loves planting seeds – here’s hoping my amateur gardening advice will bear fruit…