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From Surviving to Thriving – living with glioblastoma

Published on April 1, 2018 in Share Your Story

I’ve just launched OurBrainBank – a world-first non-profit, designed with, by, and for people like me, living with glioblastoma. I’m filled with pride, excitement, and anxiety. Our mission is to move glioblastoma from terminal to treatable, powered by patients.

This is an utterly positive, great idea born out of the wholly negative diagnosis of glioblastoma.

I was diagnosed, completely out of the blue, following a seizure I had while hiking. It was January 2016. I was then a 52 year old mother of three teenagers, happily married, with a great career as SVP and Partner at one of the world’s largest PR companies.

I’d never heard of glioblastoma before. I was shocked to find out how aggressive, complex and heterogenous it is. And appalled to hear my neuro-oncologist tell me that only 5% of applications for research funding into glioblastoma succeed.

I’m a natural born campaigner, so I set about thinking what we could do to get research funding at the scale we need? At the same time, I was getting all the treatments I possibly could, adding in immunotherapy (nivolumab, paid for by BMS through its compassionate use program) and Optune. Yet very little monitoring of these treatments is undertaken. I wondered if we couldn’t get more funding and help people living with the disease by capturing their symptoms in data form, enabling their medical teams to better understand their symptoms, help the patients feel more in control, while feeding funders’ appetites for data.

Launching OurBrainBank is literally life enhancing. I’m 26 months post-diagnosis, living with a condition that has a 14 month median survival point. I believe self tracking technology has the potential to have the same impact on my disease as a block-buster new drug.

It’s certainly making me feel great!

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.

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