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Dear friend,

In February, we surveyed people living with GBM and their caregivers about clinical trials and experimental treatments. Survey results. 

The headlines make for frustrating reading.

We had 162 responses in just 36 hours—a very high and quick response rate. We found that:

  • Less than a third (28.3%) were able to find a trial for which they were eligible.
  • The majority of patients (57%) have not been offered a clinical trial.
  • Even when patients asked their physicians about clinical trials, 80% of them were told to pursue standard treatment or directly discouraged from pursuing a clinical trial.

These statistics are so alarming because we know that clinical trials and experimental treatments are essential to saving lives now, as well as securing better treatments and longer survival in the future.

OurBrainBank is looking at how we can close this gap between patient need and demand, and trial and treatment supply. We are working closely with our medical advisers, led by Fabio Iwamoto MD, Deputy Director, Division of Neuro-Oncology, Columbia University. The clinical trial survey was designed by Daniel A. Orringer MD, Assistant Professor of Neurosurgery at the University of Michigan, together with the OurBrainBank team.

We are building a patient-powered movement with a mission to move glioblastoma from terminal to treatable. Every voice counts.

We’d love to get media attention for this, so if you have contacts or are a journalist yourself, please email us or feel free to forward our press release.

With warm wishes,

Jessica Morris
Founder, OurBrainBank
Living with GBM

New to OurBrainBank? Learn about our efforts to move glioblastoma from terminal to treatable, powered by patients. OurBrainBank.org
Get the OurBrainBank App
Free to patients and caregivers in the US. Register using the code OBB100. Please spread the word to fellow travelers! 
  
Comments from app users: "Awesome news! I am recording my symptoms with the app, easy to use and I’m excited about this app!" "I just passed Day 50 and responded to the midpoint questionnaire. It’s so simple... everyone should do it!"

Join our community: Facebook group for Glioblastoma patients and caregivers. Free monthly video support chatsYouTube channel features stories from long-term survivors and a series of "how to" videos for the OBB app.

Certificate: used the OBB app for 100 days? Thank you!  Email us and we’ll mail you a certificate.

Brochures: Like OurBrainBank brochures to share? Contact us and we’ll mail you some.

Want to help raise funds? Set up a campaign with your GBM story (click "Join the Team"). 

Help OurBrainBank by shopping on Amazon Smile (select OurBrainBank as your designated charity).
 

Email us questions or comments—we would love to hear from YOU!  
OBB Founder and Chair, Jessica Morris, living with GBM
 

OurBrainBank is a registered nonprofit 501(c)3 based in the US.
OurBrainBank operates on a shoestring, and we need your help to make our mission a reality. Please consider a sustaining gift. To do so, select an amount on our Paypal page, and tick “Make this a monthly donation.” One-time gifts are welcome too.
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