OurBrainBank is a pioneering non-profit dedicated to turning glioblastoma (GBM) – the deadliest form of brain tumour – from terminal to treatable. It was founded by my auntie, Jess, after being diagnosed with GBM in January 2016. GBM has a median survival of 12–14 months with only 5% of people living longer than five years. Jess reached that five-year mark in January 2021, before passing away in June 2021.

On 6th April, Jam and I will be running the Brighton Marathon – our first ever marathon – to raise money for OurBrainBank. We would be really grateful for your support.

Jess was a wonderful person, and to me, the most amazing Aunt. She was formidable, funny, smart, driven and loved a gossip. She was blind-sided by the tumour. She had a seizure while hiking with family and friends in upstate New York. Two days later she was having brain surgery. She met this challenge with a fierce determination to try every treatment offered and receive the best possible care. Not only this, but she fought to improve outcomes for the entire GBM community, becoming an advocate for patient-centric care.

Sadly, there isn’t much funding for a disease that is both terminal and rare. Jess had spent her life as a campaigner and understood the power of patients. She enlisted neuro-oncologists, fellow patients and tech experts to launch the first non-profit created by, with, and for people living with GBM. OurBrainBank is a patient-led movement that provides a platform and home for those effected by GBM, advocates for better access to treatment for all, and harnesses patient-reported data to drive research on novel treatments.

It was the pleasure of my life to play a small part in helping Jess write her memoir All In My Head, she wrote on both her life and her experience fighting The Evil Fucker – TEF (her name for her tumour. Unfortunately, also the initials of the names of her three kids…). When her eyesight got particularly bad, I was trusted to act as scribe and editor while she dictated over Zoom. All in My Head is a powerful and moving memoir that does a much better job telling her story than I ever could.

Jess was an inspiration to so many, especially those closest to her. She was the beloved baby sister of Frances and Ben; wonderful wife to Eddie; the best mum to Felix, Emma and Tess and was loved by so many more.

Jam and I are running in Jess’s honour. To help OurBrainBank continue her work. We would be hugely thankful for anything you can give.