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Team Syren: Pediatric & Young Adult Disseminated Low Grade Glioma Brain Tumours

Some partnerships, collaborations, and friendships are simply meant to be. This was one of them.

In late 2023, we met Katie Bernard and Martin Bell. Their son, Alex, was in treatment for a rare, disseminated low-grade glioma brain tumour called DLGNT. Katie had created an international network to connect families and patients diagnosed with DLGNT. Martin was training for the Everest in the Alps challenge. Together, they were fundraising with a shared goal: to create a dedicated research grant focused on these rare pediatric and young adult brain tumours.

In 2024, we entered discussions with the Pediatric Brain Tumor Foundation (PBTF) in the United States and moved forward on a partnership to bring this research grant to life.

During this time, Alex’s tumour progressed. After 178 days in the ICU, Alex passed away at the age of 23. Through deep grief, we kept pushing forward.

In 2025, the Cancer Research Society (CRS) enthusiastically joined Kindred and PBTF as a partner. Together, a $650,000 research grant was created for pediatric and young adult disseminated low-grade glioma brain tumours. This was made possible through remarkable support from Parex Resources, Boston Consulting Group, and generous donors from around the world.

In December 2025, Dr. Adrian Levine from The Hospital for Sick Children (SickKids) was awarded the Team Syren Research Grant for his project, “Elucidating the mechanisms of dissemination and therapy resistance in pediatric low-grade glioma.”

We are Team Syren because of Alex. Alex was a talented singer-songwriter known as Syren.

We are deeply hopeful for what will be accomplished over the next three years, and we look forward to sharing updates every step of the way.

Research Summary:

Pediatric low-grade gliomas (PLGG) are the most common brain tumours in children. While many grow slowly

and can be treated, a small but serious group spreads (disseminates) through the fluid around the brain and

spine (called cerebrospinal fluid or CSF). These cases, called disseminated PLGG (DLGG), are harder to treat

and more dangerous. An international research team has gathered data from 269 such cases and found that

while some tumours have a certain genetic deletion (on part of chromosome 1), most do not share a clear

genetic cause for spreading. This suggests that other factors—like the environment around the tumour—play a

big role.

The project focuses on four goals:

1. 1. Understanding the CSF environment: Normally, CSF is not friendly to tumour cells. It is believed that DLGG tumours change the CSF to make it easier for them to grow and spread. The team will study the proteins, chemicals, and cells in the CSF to understand how this happens.
  2. Why treatments stop working: Targeted drugs (called MAPK inhibitors) have improved outcomes for children with DLGG, but they often stop working over time. The team will study tumour samples before and after treatment to find out how they become resistant.
  3. Testing new treatments in the lab: PLGG tumours are hard to grow in lab settings. The Team will use cells and organoids (mini tumour models) from real patients to test drug combinations that could prevent resistance.
  4. Creating a mouse model: The Team will develop a mouse model that mimics how these tumours spread in humans. This will help test treatments that can be delivered directly into the CSF.

This work aims to help doctors identify which tumours are likely to spread, develop better treatments, and bring new therapies into future clinical trials—ultimately improving outcomes for children with PLGG.

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