Here at The Brain Tumour Charity we're always learning, because we know if we're going to get better and come closer to finding a cure, then we have to stay up-to-date to be ahead of the curve.
We're always nagging renowned researchers to have a chat with us whenever they pop by. So, when Professor David Walker (Professor of Paediatric Oncology at Nottingham Children's Hospital, who has been involved in our HeadSmart campaign since it began) came for an unannounced visit, he was no exception, and didn't leave without imparting some knowledge first.
To some, it may seem strange to say that we all gathered, keen to learn more science, to see some stats and find out some figures, but what can I say? That's the type of people we are.
But, light-heartedness aside, we take our jobs very seriously here at The Brain Tumour Charity, it's more than 'just work', it's a purpose, so Professor Walker's insights fell on eager ears.
Professor Walker began his talk with a powerful wordle, which was created using responses from medical experts to the question 'what does precision medicine mean to you?'.
What stood out the most was that words like ' future', 'hope', and 'powerful' were among some of the largest words in the wordle – meaning they came up most frequently. These words are exactly what we and our community stand for and believe in, and we are not alone - we are all seemingly driven by the same things. And then Professor Walker came out with the hard facts and you could hear a pin drop.
We hear time and again that cancer in children is rare but the sad truth is that 1 in every 600 suffer from cancer – that's equal with cerebral palsy, epilepsy and even diabetes and many of us know a child with one of these conditions.
Cancer in childhood is shocking; when things like this strike any one young it is not only heart-breaking but can have a detrimental effect on the child's development and their future, as well as those around them. It sounds cliché but children really are our future, and for any young person the effects of cancer can have a serious impact on their job, their family, their relationships, and their future, for their entire life. And this also has a ripple effect on those around them and society.
However, whilst 70% of childhood cancers are cured, survival isn't the only factor we should consider when assessing the impact of this devastating disease. And that's why our mission is to double survival, but also, to halve the harm.
There are no known facts about quality of life in adult survivors of childhood brain tumours, and very few studies are striving to find these facts. Yet we know that if the brain is damaged, then it affects who that person is, in their life, in their family and within society, it can change their personality completely and leave life-altering side-effects.
In fact, one of these few studies looking in to quality of life has suggested around 60% may suffer mild-moderate disability. So, of the 70% who do survive, by adulthood an estimated 60% have a disability. This just has to change.
Whilst survival is important, when these years are not spent in the best way they can be then we are only half way to success. We must change the burden of harm. And, Professor Walker says, one way we can do this is through HeadSmart. By increasing awareness of the signs and symptoms, getting a diagnosis faster, and therefore being treated quicker, we can reduce the burden of harm for the most vulnerable in our society – the sick and the young.
Find out more about HeadSmart and ways you can help raise awareness of the signs and symptoms of childhood brain tumours: