Hello from OurBrainBank founder, Jessica Morris
I'm still in the fight, battling to deal with this disease and really at the cutting-edge of medicine... But sitting out here on a Saturday afternoon in the oasis of our garden is such a joy. Finding points of light when things are a bit grim, surrounded by my loving famiy and friends. Which means you guys.
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Do you like our app?
Are you a patient, carer, medical professional, brain cancer advocate or app developer? We want your input. We are running focus groups to inform improvements to our symptom tracking app. Unfamiliar with our app and study? No problem! We want your ideas too.
To join a focus group, fill out this form. We'll give you a $25 gift card for your participation. Space is limited.
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What you told us
For Glioblastoma Awareness Day, we asked patients and carers to share their real life experiences. Our survey revealed the urgent need for an improved standard of care — like the overwhelming lack of psychological support as shown here. Read the survey results and take it yourself.
We love this brilliant analogy from a carer:
Here's how I feel about our medical team: our oncologist is playing for the Rams, our radiation oncologist is playing for the Seahawks, and our NO is playing for the Eagles. We lost our offensive coordinator (surgeon) after he called in the play. My husband is the quarterback (GBM warrior) and his helmet earpiece is on the blink. I am trying to be the cheerleader, the water boy, and statistician. Where the hell is the coach?
Next steps: staging an education and awareness campaign about the GBM Bill of Rights for doctors, nurses, hospital administrators, and lawmakers.
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Karen Bruett has words of wisdom for caregivers; lessons she learned after her husband Mike sadly lost his battle with GBM.
LIVE — in between treatments, figure out what you can handle and then DO IT! Travel. Eat. Play. Laugh. Spend time with family and friends.
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Donate via OurBrainBank.org or JustGiving
Set up a crowdsourcing page
Create a Facebook fundraiser
Select OurBrainBank on Smile.Amazon.com
Checks: OurBrainBank P.O.Box 835 Telluride, CO 81435-0835
Cheques: OurBrainBank UK, 41 Cheverton Road, London N19 3BA
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Right here, right now, I’m feeling good, able to enjoy life, make a contribution, smile meaningfully, and look forward to tomorrow.
Jessica Morris
Founder and Chair
Living with glioblastoma
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Our study using a free smartphone app is for GBM patients and carers in the UK or US (patient must be 18+)
Registration codes: OBBUK (in the UK) or OBB100 (in the US)
Please spread the word. More than 600 people have downloaded the app. The more people we have, the more progress we'll make.
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