Moving glioblastoma from terminal to treatable, powered by patients
OurBrainBank is an innovative, patient-led movement designed to move glioblastoma from terminal to treatable, powered by patients.
Our pilot study, which was determined a success and closed in 2021, used a free app that patients or carers used to track symptoms, share data with clinicians, and donate data to medical research. Check back here or sign up for our newsletter to learn about our next steps.
Read our GBM Bill of Rights andprint out a copy to take to your doctor
Resources for people living with GBM and their care partners including clinical trial matching, navigation help, and support
Jessica Morris’ memoir IT’S ALL IN MY HEAD
Podcast: “The terror of brain cancer, fighting for time and the desperate need for a new approach,” Crisis What Crisis? podcast with OBB UK Board members Andy Coulson and Richard Clemmow
GIVE: PayPal, JustGiving, or mail a cheque to: OurBrainBank UK 12 Beverley Road, London W4 2LP
OurBrainBank is designed by, for, and with people with glioblastoma.
We aim to collect data and turn that data into medical currency aimed at accelerating progress.
WHO
OurBrainBank is a powerful community of people affected by GBM supporting each other through a Facebook group, newsletter, Instagram, Twitter, TikTok, and a YouTube channel. We’re growing all the time, please join us.
Medical Advisors
OurBrainBank started in the US and our medical advisors include top neuro-oncologists, neurosurgeons, academics, and other experts in glioblastoma from Columbia University, Dana-Farber Cancer Institute, the NIH, Memorial Sloan Kettering, NYU Langone Health, Northwell Health, and more. Full list of advisors.
OurBrainBank UK Board
Jessica Morris, Founder and Chair (1963-2021)
Jake Arnold-Forster, CEO
Jana Bennett (1955-2022), Media Consultant
Alex Bennett-Clemmow, Researcher
Richard Clemmow, TV and radio producer and journalist
Laura Nuttall, living with GBM
Nicola Nuttall, Advocate
Andy Coulson, Founder of strategic advisory firm Coulson Partners
Simon Matthews, Communicator and CEO, co-founder Cohere Partners
Leadership
Our board includes passionate professionals from the worlds of media, healthcare, tech, strategy, business, and communications — some living with GBM, all touched by the disease.
11,725 new cases of brain tumours are diagnosed every year in the United Kingdom
GBM is the most common high grade cancerous primary brain tumour found in adults in the United Kingdom
Glioblastoma is the fastest growing form of brain tumour and extremely difficult to treat
5% of patients survive more than five years
“The prize is great: when we crack glioblastoma, we will make serious inroads to cracking all cancers.”
— Jessica Morris, Founder of OurBrainBank
1963-2021
“I hope that OurBrainBank can give us insights which ultimately enable us to improve the care given to patients.”
— Dr Florien Boele, Leeds Institute of Medical Research at St James’s
“The key to tackling GBM lies in research. Collecting data could have a real impact on our ability to extend lives.”
— Fabio Iwamoto, MD, Deputy Head of Neuro-Oncology at Columbia University
WHAT
OBB Explore: researchers use patient data & methodology.
OBB Engage: patient-centered advocacy
MEDIA
GIVE
OurBrainBank UK
12 Beverley Road
London W4 2LP
©OurBrainBank UK 2022. Registered Charity: 1184699. The OBB pilot study was UK University Ethics approved. Principal Investigator: Dr Florien Boele, YCR Academic Fellow at the University of Leeds Institute of Medical Research and Leeds Institute of Health Sciences. OurBrainBank launched in the US in 2018.