A talented young musician from London is continuing to make an impact, even after his passing. Alexander Bernard-Bell, who produced music under the name Syren, tragically lost his life to a rare brain tumor in January at just 23 years old. His story now fuels a growing wave of awareness and fundraising for brain cancer research, with friends and family rallying in his memory.
Three of Alexander’s close friends will take on the Brighton and Hove Triathlon on August 31st. Their motivation is clear: to raise money for research into the rare condition that claimed his life and to honor the vibrant, creative spirit Alexander was known for.
Diagnosed in October 2021, Alexander was found to have DLGNT — Diffuse Leptomeningeal Glioneuronal Tumour — an incredibly rare form of low-grade glioma. At the time, just 100 cases had ever been recorded in medical literature. His oncologist admitted they had never encountered it before.
Alexander’s family quickly mobilized, reaching out to doctors and researchers around the world, desperate for answers and hopeful for treatment options. Despite their determination, Alexander’s condition began to worsen in August 2024, leading to his admission at Charing Cross Hospital.
In the final months of his life, Alexander spent 178 days in intensive care. He underwent four major brain surgeries and developed HSV encephalitis, a life-threatening brain inflammation. With no treatment options left, Alexander passed away in late January — a devastating loss to his loved ones and the wider music and charity community.
Carrying on a Legacy of Awareness and Advocacy
Alexander’s legacy lives on through his work as a Young Ambassador for The Brain Tumour Charity, the world’s largest funder dedicated solely to brain tumor research. He championed awareness and support for others facing brain cancer before his death. Now, his sister Hannah continues to raise awareness and offer guidance to families affected by similar diagnoses.
Hannah’s husband, Alex Preston, also takes action to support the charity. Just one day after his wedding in April, he ran the London Marathon, raising £30,000 for The Brain Tumour Charity. Now, Alex is preparing for the Brighton and Hove Triathlon as part of a three-man relay team.
The team consists of Theo Jessel, who will take on the swimming portion of the event, Andy Dodds who will complete the cycling section, and Alex Preston himself who will run the final leg of the triathlon. Together, they form a strong and committed unit determined to make a difference in Alexander’s name.
A Difficult Journey to Diagnosis
Alexander’s journey to a diagnosis was long and harrowing. His mother, Katie, shared the painful and uncertain path they walked as a family.
“It took a year to diagnose Alexander’s brain cancer, despite relentless migraines, nausea and papilledema (swelling of the optic nerve) which eventually led to him losing the sight in in his right eye.”
“Alex 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 called DLGNT – Diffuse Leptomeningeal Glioneuronal Tumour.
Creating Community and Support for Other Families
Katie described the emotional toll the diagnosis took on the family. The isolation was overwhelming — no one they knew had even heard of DLGNT, let alone had experience with it. The reality of facing a rare and incurable brain cancer felt terrifying and deeply disorienting.
“At the time of Alexander’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.
Determined to spare other families from similar despair, the Bernards took action. They launched a dedicated website focused on DLGNT to provide clear, reliable information about the condition. That website has since become a global hub, uniting patients, neuro-oncologists, and researchers in the fight against DLGNT.
Beyond that, the family has formed strong partnerships with three internationally respected brain tumor charities: The Kindred Foundation (Canada), the Pediatric Brain Tumor Foundation (USA), and The Brain Tumour Charity (UK). Together, these organizations support a growing movement to raise awareness, provide accurate information, and fund critical brain tumor research.
Fundraising with Purpose: Team Syren’s Powerful Impact
Under the banner of Team Syren, the family and their supporters have raised an impressive £124,000 to date for The Brain Tumour Charity. Katie emphasized that this mission is about more than honoring Alexander. It’s about sparing others from the heartbreak her family has faced.
Through these efforts, Alexander’s life continues to inspire tangible change. The funds raised go directly toward vital research aimed at improving treatment options and outcomes for patients with rare brain tumors like DLGNT. Each step taken by his loved ones is a tribute to his strength and spirit.
The upcoming Brighton and Hove Triathlon on August 31st marks another powerful chapter in that mission. With Alex Preston running, Theo Jessel swimming, and Andy Dodds cycling, the relay team is set to carry Alexander’s legacy forward in front of the Brighton crowds. Their motivation is clear — to fund better futures for families impacted by rare brain cancers, and to keep Alexander’s memory alive through meaningful action.
Supporters can still contribute to Team Syren’s campaign through their dedicated fundraising page, helping to extend their impact even further.
The Brain Tumour Charity continues to be a central beneficiary of this fundraising movement. These funds are used to fuel ongoing research into primary brain tumors, including the extremely rare conditions like DLGNT. The charity’s work — powered by the dedication of people like Alexander, Hannah, Katie, and Alex — brings hope to families who otherwise would have nowhere to turn.
Their mission is as clear as it is vital: to ensure that no one else has to face this devastating journey alone, and to help build a future where rare brain tumors are no longer a death sentence.
