In October 2021, Alexander Bernard-Bell was diagnosed with brain cancer at the age of 20. 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 Diffuse Leptomeningeal Glioneuronal Tumours.

Alex’s diagnosis was so unresearched that at the time that his parents, Katie and Martin, had to embark on a global quest for answers, reaching out to oncologists, neuro-oncologists, and researchers worldwide. However, before treatment could begin, they 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 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 called Trametinib (MEK inhibitor) was identified, and treatment started in early December 2021.

Alex experienced notable improvements on Trametinib, with tumour regression in the brain and spine. However, by the summer of 2022 he started to have clonic tonic seizures which were very debilitating and required yet more medication to keep them under control.

Signs of tumour progression became evident on MRI scans in early 2023. With no other targeted treatment available in the UK, the family tried to access a new drug called Tovorafenib through a clinical trial in Spain. Despite their best efforts, regulatory hurdles in Barcelona meant that Alex was not eligible for the clinical trial and he had to return to the UK in June 2023 with no idea of how to access the drug. After an unwavering eight-week campaign, the family managed to secure compassionate use of Tovorafenib (RAF inhibitor) for Alex in the UK, resulting in significant tumour reduction within six weeks.

Less than a year later however, the MRI scans once again showed signs of tumour progression and Alex started to have Status Epilepticus (back to back seizures that will not stop without medical intervention). With no other treatment available plans were made for radiation therapy at UCLH. However, on 6 August 2024, the week before Proton Bean Therapy was due to start, Alex collapsed with his third attack of Status Epilepticus and was admitted to Charing Cross Hospital in London. Little did they know that he would never return home.

Whilst in hospital and in a cruel twist of fate, Alex contracted Herpes Simplex Virus Encephalitis and had to have an emergency craniectomy to save his life. The damage to Alex’s brain from the HSV was so severe that radiation and all chemotherapy was ruled out and the only treatment that the family were eventually able to get him was Ulixertinib (ERK inhibitor) brought into UK on a special licence from USA for compassionate use. This drug did not work and Alex died on 30 January 2025 aged 23 after 178 days in intensive care.

At the time of Alex’s diagnosis, the Bernard-Bell's felt completely lost as a family. They didn’t know anyone else with DLGNT and they didn’t know who to turn to or who to believe. They were terrified at the dawning realization that there is no cure for this rare form of cancer.

From that point on, the Bernard-Bell family became dedicated to providing information about DLGNT and building an international community of DLGNT patients. Using the group name ‘Team Syren’ (Alex was a singer song writer known as Syren) they 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 in the UK – to raise awareness and funds for research into brain tumours.

In February 2024, Team Syren, made up of Alex’s father Martin and four friends, 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.

In February 2026, Team Syren will return to the mountains to take on the 2026 Everest in the Alps challenge in honour of Alex.

The Everest in the Alps challenge raises money for the Everest Centre for Research into Paediatric Low Grade Brain Tumours, which is a groundbreaking international research initiative bringing together experts from Germany and the UK.

You may wonder, "Why is funding research so crucial?"

The answer lies in its profound impact on our children like Alex and their families. Imagine if it were your child or loved one facing this daunting diagnosis. Team Syren's mission is clear - to raise funds for groundbreaking research into brain tumours, particularly DLGNT, where research is scarce.

You possess the power to change lives and contribute to pioneering research that offers hope to families like Alex's. Join us in supporting Martin and his team, not merely in pursuit of a mountain's peak, but in pursuit of a future where every individual diagnosed with DLGNT, like Alex, has the chance to reach for their dreams rather than fight for their lives.