In 2024 Team Syren kicked off our fundraising initiative to raise awareness and funds for brain cancer research by taking on an extraordinary challenge in the Swiss Alps. Over four days, they ascended 8,848 meters (the height of Mt Everest) on skis and at the start of 2026 we will be organising another Everest in the Alps fundraiser, so reach out if you want to take part.

In 2025, Alex Preston, our son-in-law to be (wedding in May) is stepping into our fundraising shoes and taking on two massive challenges to raise money and awareness for brain cancer research. On 25th January Alex completed the first marathon as part of his training, and on 27th April he will be running in the London Marathon with his mother and his brother !!

WHY ARE WE DOING THIS ?

On 30 January 2025 our son died aged 23 from brain cancer after spending 6 months in hospital. He was diagnosed with a type of paediatric low-grade glioma cancer called DLGNT in October 2021 aged 20, after suffering from relentless migraines and papilledema (swelling of the optic nerve) for more than a year.

Alex's diagnosis was so rare that his oncologist had never heard of it, so we embarked on a global quest for answers, reaching out to oncologists, neuro-oncologists, and researchers worldwide. At the time of Alex’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.

Since then, we have set up a website to provide information on DLGNT and we have created an international community of over 50 DLGNT patients - this might not sound a lot, but there are only 100 cases of DLGNT globally in medical literature. We 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 here in the UK - to raise awareness and funds for brain cancer research.

You may be thinking why is this important? It is just another cancer.

(1) Brain tumours may be rare but they kill more children and adults under 40 than any other cancer.

(2) Brain tumours reduce life expectancy by 27 years on average – the highest of any cancer.

(3) Only 13% of teens and adults survive for 5 years after a brain cancer diagnosis.

(4) But despite these awful statistics, brain tumour research represents only 3% of the national spend on cancer and there here has been only 1 new treatment developed over the last 20 years.

As brain cancer is so desperately under researched, it is imperative that there is an international approach to data collection and research and our approach has been to bring together experts, to connect these researchers to the medical data provided by our patient network; and to fund critical brain cancer research – and this is where we need your help

Please support our fundraising initiatives all in aid of Team Syren and raising awareness and funds for brain cancer research.

Alex was a musician called Syren and he made a documentary of how brain cancer influenced his music. Please click on the link below to watch.