OurBrainBank’s report 2019:
The Potential of Patient Power
Our achievements, our goals
OurBrainBank was launched nearly two years ago by, with and for people living with glioblastoma. Our mission was clear: to see if a human-centered approach to tackling GBM could help people with the disease now, and in the future. Two years is a long time for a newly diagnosed GBM patient, longer than median survival. OurBrainBank has made those two years count.
OurBrainBank is an innovative, patient-led movement designed to move glioblastoma from terminal to treatable, powered by patients.
OurBrainBank secured IRB approval and 501(c)3 status in early 2018. Our app went live in March 2018. Since then, we’ve recruited 530+ people to our app, collected 10,700+ data points, and added 1000+ members to our community.
Our global community is patients, care-givers, and loved ones whose lives have been affected by the deadliest of brain cancers — with the diagnosis typically coming as a life-changing shock.
The power of this shared experience is immense: it drives us forward and gives us direction as we assess what we’ve learned, building on our successes and branching out into new territories.