In Loving Memory of Alexander Bernard-Bell (2001–2025)

In October 2021, Alexander Bernard-Bell was diagnosed with brain cancer at the age of 20. For a year prior, he had endured relentless migraines and papilledema (swelling of the optic nerve), which eventually led to the loss of sight in his right eye. After multiple procedures—including a brain biopsy and the implantation of a shunt—it was only following a third operation on his lower spine that Alex was diagnosed with a rare paediatric low-grade glioma called Diffuse Leptomeningeal Glioneuronal Tumours (DLGNT).

Alex’s diagnosis was so rare and under-researched that his parents, Katie and Martin, had to embark on a global search for answers. They reached out to leading oncologists and researchers across continents. But before treatment could begin, they faced a major hurdle: insufficient tissue for genomic analysis. A second brain biopsy provided more clarity, and with expert input from institutions including Toronto Sick Kids, Heidelberg, Memorial Sloan Kettering, and Great Ormond Street Hospital, Alex began treatment with Trametinib (a MEK inhibitor) in December 2021.

The drug initially brought hope—tumours regressed in both brain and spine. But by summer 2022, Alex began experiencing debilitating seizures. In early 2023, MRI scans revealed tumour progression. With no targeted treatments available in the UK, the family sought access to Tovorafenib via a clinical trial in Spain. Regulatory barriers prevented participation, but after an intense eight-week campaign, Alex received the drug on compassionate grounds in the UK. It led to significant tumour reduction within six weeks.

Sadly, the cancer returned. In mid-2024, Alex began experiencing Status Epilepticus—back-to-back seizures requiring emergency intervention. Plans were made for radiation therapy, but just before it was due to begin, Alex collapsed and was admitted to Charing Cross Hospital. Tragically, while in hospital, he contracted Herpes Simplex Virus Encephalitis and underwent emergency brain surgery. The damage was so severe that radiation and chemotherapy were no longer viable. The final treatment attempt—Ulixertinib (an ERK inhibitor)—was brought in from the USA under special licence, but it was unsuccessful.

On 30 January 2025, after 178 days in intensive care, Alex passed away at the age of 23.

Carrying Alex’s Legacy Forward

At the time of his diagnosis, the Bernard-Bell family felt lost. They had never heard of DLGNT and didn’t know where to turn. But from that moment on, they committed themselves to building a global community for DLGNT patients and families. Under the name Team Syren—honouring Alex’s identity as a singer-songwriter—they partnered with three leading brain tumour charities:

Kindred Foundation (Canada)

Pediatric Brain Tumour Foundation (USA)

The Brain Tumour Charity (UK)

Together, they raise awareness and funds for research into paediatric brain tumours.

In February 2024, Team Syren completed the Everest in the Alps challenge—ascending 8,848 meters on skis over four days in the Swiss Alps. It was more than a physical feat; it was a powerful stand against brain cancer.

In February 2026, Team Syren will return to the mountains to take on the challenge once again—this time in memory of Alex.

Why Your Support Matters

The Everest in the Alps challenge raises funds for the Everest Centre for Research into Paediatric Low Grade Brain Tumours, a pioneering initiative uniting experts from Germany and the UK.

Why is funding research so vital?

Because it gives families like Alex’s hope. It builds pathways to treatments that don’t yet exist. It means that one day, no parent will have to hear that there is no cure.

You have the power to change lives. To help build a future where children diagnosed with DLGNT can dream, thrive, and live fully—not just fight to survive.

Join us in honouring Alex’s memory. Support Team Syren—not just in climbing a mountain, but in conquering one of the most formidable challenges in paediatric medicine.