May is Brain Tumor Awareness Month in the US, a time to collaborate and celebrate. This year, it’s proving to be a stark reminder of the challenges we face. We’ve had negative results for two promising treatments: Nivolumab and Depatux-M.
Our reaction? To redouble our efforts. We must push harder to get patients onto trials, secure more clinical trials, better treatments, and more research funding. All with patients at the center. There is hope.
The brain tumor community is listening.
Here’s Jessica and her daughter Tess making the cover for the American Brain Tumor Association 2019 annual meeting. Thank you to Kathy Oliver, for inviting us to join the International Brain Tumor Association annual meeting in October. We look forward to sharing our plans with people from all over the world.
Perhaps most significantly, two of our medical advisors want to add the OBB App to their upcoming clinical trial protocols. Watch this space for updates!
The patients are acting. We have 400 app users, and growing. We want to up our recruitment from 15 new patients a month to 50. The more app users we have, the more progress we can make. You can help by sharing our social media posts, this newsletter, and ideas, direct to us!
Our regular “OurBrainBank Voices” free video chats develop deep connections between patients and caregivers. Recent hosts include the fantastic Mark Cesarano, an insurance professional living with GBM and a strong member of our community. Mark offers free practical advice on how to navigate the complex worlds of insurance and benefits. “OurBrainBank’s ability to collect large amounts of data is important. Also important is for people suffering from GBM to know they’re not alone.” Thank you Mark for helping so many people.
Thanks also to our collaborator, Dan Orringer MD, neurosurgeon (right), for hosting a chat; and to Bruce Hellman, founder and CEO of uMotif, for hosting one Thursday, May 23. Join our Facebook group or write to us for an invitation.
We are growing our movement, growing our influence, connecting to impatient patients, collaborating to make change. This disease is so complex, so aggressive, and so hard to beat. We will not stop until we’ve achieved our mission. Thank you for joining us. We need you!
Thank you to the OurBrainBank community—people living with GBM, their loved ones, friends, family, medical professionals, researchers, and anyone whose life has been changed by this terrible disease. Your support gives the magic power of hope.
New to OurBrainBank? Learn about our efforts to move glioblastoma from terminal to treatable, powered by patients. OurBrainBank.org
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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."