Copy
View this email in your browser

The GBM community is used to challenges, but Covid-19 is one that we never expected. We're a resilient community. We're used to self-isolation. We're used to fear of infection. Our experience can help others. How are you coping? 

Did you know that the Centers for Medicare & Medicaid Services (CMS) has increased access to telehealth services so that beneficiaries can get a wider range of services from their doctors without having to travel to a healthcare facility? Fabio Iwamoto MD, Chair of the OurBrainBank Medical Advisors and Deputy Director of Neuro-Oncology at Columbia University, points out how this may help the GBM community:

"Telehealth visits were usually restricted to patients in rural areas without access to healthcare in person. The US Federal Government has broadened access to telehealth so that beneficiaries can receive a wider rage of services from their doctors without having to travel to a healthcare facility due to Covid-19. This maybe a good opportunity for patients with GBM in need of a second opinion.


We've introduced regular Tuesday video chats so that we can stay connected and share our stories. Join your fellow GBM patients and carers every Tuesday at 12 noon ET. 

Please also keep in touch with us via Facebook, Twitter, YouTube, Instagram, and Linkedin. A member of our Facebook group posted a good video about living with GBM during a pandemic.

We hope your medical center will continue to provide all your treatments. Our fellow advocates the National Brain Tumor Society offers Covid-19 information and resourcesAlso, the International Brain Tumour Alliance has assembled an excellent list of Covid-19 links for brain cancer patients, carers, and healthcare professionals.

If you're using our free symptom-tracking app, please continue to do so. If you're having video and phone consults, you can send your data to your medical team via email using the "Share my data" feature, here’s a “how to” video

We want to continue to grow and stay focused on our mission: to move GBM from terminal to treatable, powered by patients.

You are not alone. We are here for you. 

Thank you for being part of our community and stay safe!

Best,
The OurBrainBank Team: Jessica, Aurelia, and Martha

 

PLEASE SUPPORT OURBRAINBANK
 
Please consider a recurring gift via PayPal, donate on JustGivingOurBrainBank.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 41 Cheverton Road, London N19 3BA

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!  
 
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
Twitter
Facebook
Website
Email
Instagram
YouTube
Copyright © 2020 OurBrainBank, All rights reserved.


Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.

Email Marketing Powered by Mailchimp