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 used a free app that patients or caregivers used to track symptoms, share data with clinicians, and donate data to medical research. After closing our successful study in 2021, we plan to launch a new study soon.
Read our GBM Bill of Rights and print 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
OUR STUDY
OurBrainBank is a new approach to cracking cancer. We focus on one of the most complex and aggressive brain cancers — glioblastoma — because overcoming one of the toughest cancers may be the key to cracking them all. OurBrainBank was designed by, for, and with people with glioblastoma.
Researchers need data from people living with GBM to help find new and better treatments, extend outcomes, and to improve quality of life. We closed our pilot study in 2021, stay tuned for our next steps.
WHO
OurBrainBank is a powerful community of people affected by GBM supporting each other through a Facebook group, newsletter, Instagram, Twitter, and our YouTube channel. We’re growing all the time, please join us.
Leadership
Our board includes passionate professionals from the worlds of media, tech, strategy, business, and law — some living with GBM, all touched by the disease.
Medical & Tech Advisors
Our medical and tech advisors include neuro-oncologists, neurosurgeons, academics, and other experts from institutions such as Columbia University, Dana-Farber Cancer Institute, the NIH, Memorial Sloan Kettering, NYU Langone Health, and Northwell Health.
13,000 people are diagnosed with glioblastoma in the US each year
15,000 people are lost
5% five-year survival rate
5% of research funding applications succeed
Research shows that patients who self-track symptoms and treatments have better outcomes
“The prize is great: when we crack glioblastoma, we will make serious inroads to cracking all cancers.”
— Jessica Morris, OurBrainBank Founder 1963-2021
“We’re honored to have world-class neuro-oncologists from top treatment centers advising us.”
— Kelli Duprey, Principal Investigator
“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
OBB Empower: improved access to clinical trials