In October 2021 our son 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.

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.

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

In February 2024, Martin and 4 of his friends (known collectively as Team Syren) completed an extraordinary challenge in the Swiss Alps. Over four days, they ascended 8,848 meters (the height of Mt Everest) on skis. This incredible feat, known as the Everest in the Alps challenge, transcended merely conquering a mountain, it was about defeating a formidable adversary – brain cancer. At the start of 2026 we will be organising another Everest in the Alps fundraiser and if you want to join in please contact us.

In 2025, Alex Preston, our son-in-law to be (wedding in May) is stepping into our shoes and taking on two massive challenges to raise money and awareness for brain cancer research. On 25th January Alex will be running in the Pagan Trails marathon https://outeredge-events.com/pagan-trails/ in Dartmoor. With over 1500m of ascent and set in midwinter, this is a significant challenge. Then on 27th April he will be running in the London marathon.

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