Glioblastoma Awareness Day:
Patients ideas and demands revealed
People living with GBM overwhelmingly call for better treatment, according to an unprecedented OurBrainBank survey of 400+ people affected by the disease. Jessica Morris will deliver the results to Capitol Hill on July 17, the first Glioblastoma Awareness Day.
From our press release: “A huge 94% of people directly affected by glioblastoma see providing the ‘best treatment regardless of personal financial situation’ as essential.”
Hundreds of comments like these poured in:
“I've lost 4 immediate family members to GBM4 and was only able to get genetic testing on my father after he passed because I drew the blood and sent it off. No family member should have to do that.”
We thank the US senate for their bipartisan resolution that honors those we’ve lost, and calls for action to help people living with this terrible disease.
A huge thank you to all of our supporters. Since our inception less than two years ago, we’ve made tremendous progress. Our IRB-certified symptom-tracking app has collected 8,000+ data points for research.
The overwhelming response to our survey demonstrates our ability to touch the patient community and advocate for change. We couldn’t have done this without you.
We’re ready to expand with three new programs: OBB Explore, OBB Empower, and OBB Engage.
OBB Explore explores the data we’ve collected to enhance three early-stage GBM trials. Need: $10,000/month to cover the costs of adapting our app.
OBB Empower is a new, human-centered approach to bring clinical trials to patients. Need: $6,000/month to guide patients through the maze of clinical trial options.
But this isn’t enough. We need to build on the momentum we are seeing on Capitol Hill.
OBB Engage will advocate for change that helps patients live better, longer lives. Need: $10,000/month to grow our advocacy program.
We operate on a shoestring. Your gifts are appreciated! An annual total of $500,000 is a modest investment in transformative impact.
Join us in ensuring that this inaugural Glioblastoma Awareness Day makes an impact.
Make a sign, take a selfie, and hashtag #GBMDay #OurBrainBank. If you’re remembering someone you’ve lost, show a picture.
PS: If you shop on Smile.Amazon.com on Prime Day, July 16, please select OurBrainBank as your charity.
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
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."