Team Syren

Alex Bernard-Bell

Alex Bernard-Bell was diagnosed with a rare and devastating form of brain cancer called DLGNT in October 2021 when he was only 20 years old. This life-shattering diagnosis came after a year of enduring relentless migraines, seizures, the loss of sight in one eye, and misdiagnoses.

Alex experienced a wide range of treatments and many precision-based experimental therapies through clinical trials. This gave Alex and his family more time but tragically, these treatments failed Alex and he passed away in January 2025.

A singer and songwriter also known as Syren, Alex tells his own story best – in his own words.

What is DLGNT?

DLGNT, or Diffuse Leptomeningeal Glioneuronal Tumor, is a pediatric brain tumour that can also be diagnosed in adolescence and young adulthood, though far less frequently. It was first characterized by the World Health Organization in 2016, and fewer than 100 cases have been reported in the medical literature to date.

DLGNT tumours are not well understood, presenting significant challenges in diagnosis, treatment, and monitoring. They are classified as a type of pediatric disseminated low-grade glioma (pdLGG) brain tumour.

Everest in the Alps

Determined to fight for better outcomes for DLGNT patients, Alex’s parents—Katie Bernard and Martin Bell—have brought together patients and families from around the world. Wanting to do more, they set out to raise funds to advance research into this rare and devastating disease.

In March 2024, Martin trained for and completed the Everest in the Alps challenge. He and three courageous friends formed Team Syren, embarking on an extraordinary journey in the Swiss Alps. Over four days, they skied a staggering 8,848 meters—the height of Mount Everest.

With generous support from Parex Resources Inc. and extensive grassroots fundraising, Katie and Martin raised nearly $185,000 for a new research initiative focused on pediatric and young adult disseminated low-grade glioma (pdLGG) brain tumours.

Creating a Research Grant for pdLGG Brain Tumours

To expand the impact of these efforts, a new partnership was formed with the Pediatric Brain Tumor Foundation in the United States. With additional contributions from Kindred Foundation, the total raised reached $315,000 CAD.

Announcing the 2025 Translational Research Grants in Brain Cancer

In April 2025, Kindred Foundation met with Brain Canada Foundation (BCF) and the Cancer Research Society (CRS) to explore opportunities to co-fund a groundbreaking research grant targeting pdLGG brain tumours.

Thanks to the extraordinary collaboration between BCF, CRS, and Kindred, a new research grant will be included in the 2025 Translational Research Grants in Brain Cancer competition.

This new grant has the potential to fund a Canadian-led pdLGG research project—and, if a successful application is selected, it could receive up to $1 million CAD in funding.

We are thankful to Alex’s parents, Katie Bernard and Martin Bell, Brain Canada Foundation, the Cancer Research Society, The Pediatric Brain Tumour Foundation, and Parex Resources Inc for your trust and partnership.

This is for Alex.

This is for every family facing a rare brain cancer. This is how we keep moving forward.

If you would like to donate to Team Syren to support the fundraising around the 2025 Translational Research Grant in Brain Cancer for pediatric diffuse low-grade glioma, we would greatly appreciate your support. We are deeply grateful to everyone who has donated to make this grant a reality.

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