On the 27th of April I will be running the London Marathon to raise money for the Brain Tumour Charity. My daughter-in-law's brother died last month from brain cancer at just 23 years old. All money will go towards research into brain tumours.

You may be thinking why is this important? It is just another cancer.

(1) Brain tumours may be rare but they kill more children and adults under 40 than any other cancer.

(2) Brain tumours reduce life expectancy by 27 years on average – the highest of any cancer.

(3) Only 13% of teens and adults survive for 5 years after a brain cancer diagnosis.

(4) But despite these awful statistics, brain tumour research represents only 3% of the national spend on cancer and there here has been only 1 new treatment developed over the last 20 years.

In October 2021 Alex was diagnosed at the age of 20 with brain cancer. For the previous year he had been suffering from relentless migraines and papilledema (swelling of the optic nerve) which eventually led to the loss of sight in his right eye. He had a brain biopsy which revealed nothing and an operation to implant a shunt to control the pressure in his brain. It was only as a result of a third operation on his lower spine, that he was finally diagnosed with a type of paediatric low-grade glioma cancer called DLGNT.

Alex's diagnosis was so rare that his oncologist had never heard of it, so we embarked on a global quest for answers, reaching out to oncologists, neuro-oncologists, and researchers worldwide. However, before treatment could begin, we faced a significant hurdle - a lack of sufficient tissue for necessary genomic analysis. A month later, as the cancer spread rapidly, Alex underwent another brain biopsy which gave us a clearer understanding of the genetic mutation driving the cancer. With expert consensus from institutions like Toronto Sick Kids, Heidelberg in Germany, Memorial Sloane Kettering in New York and Great Ormond Street Hospital in London, a targeted drug was identified, and treatment started in early December.

At the time of Alex’s diagnosis, we felt completely lost as a family. We didn’t know anyone else with DLGNT. We didn’t know who to turn to, who to believe and we were terrified at the dawning realisation that there is no cure for this rare form of cancer.

Since then, we have set up a website to provide information on DLGNT and we have created an international community of over 50 DLGNT patients - this might not sound a lot, but there are only 100 cases of DLGNT globally in medical literature. We have partnered with three world class brain tumour charities - Kindred Foundation in Canada, the Pediatric Brain Tumour Foundation in the USA and the Brain Tumour Charity here in the UK - to raise awareness and funds for brain cancer research.

As brain cancer is so desperately under researched, it is imperative that there is an international approach to data collection and research and our approach has been:

• to bring together experts from Dana Faber, Toronto Sick Kids, Great Ormond Street and the Everest Centre in Heidelberg

• to connect these researchers to the medical data provided by our patient network; and

• to fund critical brain cancer research – and this is where we need your help

Please support Alex's fundraising initiatives all in aid of Team Syren and raising awareness and funds for brain cancer research.