View this email in your browser

A Global Bill of Rights for Glioblastoma Patients

Today, July 22nd 2020, is GBM Awareness Day, a day to honor everyone affected by this disease and raise awareness about the urgency of finding a cure. To mark this important day we are launching a GBM Bill of Rights.

The GBM Bill of Rights is an OurBrainBank initiative and is supported by major, global cancer nonprofits, including the International Brain Tumour Alliance, the American Brain Tumor Association and the National Brain Tumor Society (US), the Tessa Jowell Foundation (UK), and the Chris O’Brien Lifehouse (Australia).

Please share on your social media using #GBMRights

OurBrainBank founder Jessica Morris, living with GBM, said, “The GBM Bill of Rights is a practical and aspirational tool for all of us. Empowered to demand these rights, we have the ability to improve quality of life and outcomes, and to move the needle on this devastating disease. This is a roadmap to patient power and a brighter future.”

NBTS is making a big (virtual) noise on GBM Awareness Day

"This is a day to share the stories and experiences of patients, family members, medical providers, and researchers to raise awareness of the challenges presented by GBM and why we need more research and more effective treatments."

Join the NBTS virtual event at 10 am ET today. Jessica Morris, OBB founder, will be introducing the GBM Bill of Rights as part of this virtual event between 10:15am and 10:30am.

My GBM Story: Meredith Moore, long term survivor and OBB board member

I was diagnosed in 2005 with a GBM IV. The first neurosurgeon was unable to fully resect the tumor, so I had a second resection one month later. Subsequently, I did a clinical trial for a brain infusion of IL13 (interleukin 13), standard radiation as part of the clinical trial, and then in 2006, I followed-up with chemotherapy.

I have no major side-effects from the diagnosis and treatment, no recurrences, and I live a normal life of a mom, spouse and business owner.

Read Meredith's full story.

OurBrainBank is extremely important so that we can monitor and track the data from people going through GBM, in order to build a bigger set of data to better understand this disease, so that future patients can benefit from us.

Every day, a doctor walks into an exam room and tells a patient that they have been diagnosed with glioblastoma. A patient learns that GBM is the most common, complex, treatment-resistant, and deadliest type of brain tumor. (Source: NBTS)

The GBM Bill of Rights will help patients and families as they navigate their difficult journey.

Please consider a donation to help us roll this out the GBM Bill of Rights.

Please give via PayPal US, or PayPal UK, donate on JustGiving, GoFundMe Charity, OurBrainBank.org, or mail a gift to the address below

DONATE TODAY

Get the Free OurBrainBank App

GBM patients and carers in the UK or US (patient must be 18+)
Registration code:
OBBUK (UK)
OBB100 (US)
Please spread the word. More than 600 people have downloaded the app. The more people we have, the more progress we'll make.

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 Facebook group for GBM patients and caregivers. Email us for invites to free video support chats. Visit our YouTube channel for longterm survivors' stories and "how to" videos for our app. Instagram too.

Want to help? Donate, set up a crowdsourcing page, give on JustGiving or mail a check to OurBrainBank P.O.Box 835 Telluride, CO 81435-0835 or a cheque to OurBrainBank UK 12 Beverley Road London W4 2LP UK

Help OurBrainBank by shopping on Amazon. Start on Smile.Amazon.com (US) or Smile.Amazon.co .uk (UK) and select OurBrainBank as your designated charity.

Please email us questions or comments, we would love to hear from YOU!

Not on our mailing list? Sign up here.

The OBB study is approved by the IRB in the US and is UK University Ethics approved. OBB launched in the US in 2018 and is a 501(c)3. UK Registered Charity #1184699.

Founder and Chair, Jessica Morris, living with glioblastoma

Photo by Maria Spann

Please share on your social media using #GBMRights

NBTS is making a big (virtual) noise on GBM Awareness Day

OurBrainBank Supporters