Jordan Toms, one of our Young Ambassadors and living with a brain tumour himself, attended the evening.
In March 2015, Jordan suffered a seizure in his final year as a Business student at Bournemouth University and shortly after was diagnosed with an oligodendroglioma brain tumour, aged just 23.
Along with his two brothers, Jordan has set up his own fitness brand, Resolute. Along with over 200 others from our community, he joined the Ask the Researcher audience on 6 March.
“The excitement about who was coming to talk about the latest and greatest breakthroughs related to brain tumours, in terms of diagnoses and treatments, at Kings College in London was huge.
We’d be the first to hear and we’d have the opportunity to ask questions to the professors about the pioneering developments they were presenting. This was the first live ‘Ask the Researcher’ event hosted by The Brain Tumour Charity, and it went so well.
Alastair Stewart OBE was an incredible host as he kept the evening flowing well, and added on to questions from the crowd just to get comprehensive answers.
Professor Richard Gilbertson really got the ball rolling. He specialises in children’s brain tumours and he discussed his field like a magician, plucking people from the crowd to explain his developments. The first of the five things I learnt was that he has been involved in understanding the language brain tumours speak and can tailor the treatment plans for individual patients.
Martin van den Bent, a specialist in adult brain tumours, came up next and he had slides that would blow your mind.
He explained how when the coding in DNA goes wrong, these errors result in protein overload or limiting mutations. The second of the five things I learnt is that they have developed a ‘Trojan Horse’ method that would use the abnormal proteins to sneak a working drug into the tumour.
The drug then works by attacking the tumour from the inside out. This is different to conventional treatments that try to attack from the outside in, and more often than not never get to the tumour due to the blood brain barrier.
Paul Northcott who’s based in America and works in paediatric oncology and biomedical research was next. We all hear brain tumours are rare, complicated, and unique for every patient in terms of approach, aggression, location, which is discouraging to say the least.
But, and this is a big but, the third thing I learned was Paul et al are identifying tumour types and sub types to really narrow it down to a tee the approach doctors can have, as well as help improve the information for patients.
Finally Dr Colin Watts had the greatest news of all. Introducing the fourth of the five things I’ve learnt…(drum role please). His talk slayed the post code lottery issue, and how the fabulous ‘pink drink’ should be available for all.
If you don’t know about this drink, it helps the neurosurgeon by lighting up the tumour cells in the brain (under a blue light). So essentially the tumour will be ‘waving’ at the surgeon in the operating room and so it can be seen and removed more easily, helping to improve outcomes. Now isn’t that the best cocktail to take before surgery.
The fifth and final thing I’ve learnt, is that there is a true consensus nationally and internationally to give the best chance to brain tumour patients.
The efforts they’re making with big pharmaceutical trials and ensuring availability to all is really pushing the NHS to ‘wake up and smell the bacon’. It’s absolutely ground-breaking stuff and it’s so promising that a cure is on its way, improvements in treatment are on the way and the understanding of quality of life will be improved from this in-depth, all knowing, sub-categorising of brain tumours.
That’s my top learning from the night. The proof is really in the pudding. For the next one, I’m sure there will be more things to learn and it’s been so uplifting to be there.
I’d definitely recommend to anyone who’s fighting or been affected by a brain tumour to go.”