Receiving a GBM diagnosis can be very lonely and frightening. But you are not alone.
NEWS October 2023
Talking to others who are going through the same experiences as you can often be comforting, helpful and inspiring.
OurBrainBank Facebook Group
Our private Facebook group for people living with GBM, care partners, advocates, and those who’ve lost a loved one. We share information and experiences and ask questions about GBM. The group currently has 1,800+ members. To join, click the “Join group” button and answer the short entry questionnaire which asks how your life has been affected by GBM and for your pledge to abide by the group’s basic rules of conduct. Within the group is a mentor program where you can connect one-on-one with other people — those living with GBM, care partners, or someone who has lost a loved one.
GBM Survivors to Thrivers
A private Facebook group with 17,000+ members for patients, caregivers, and families of people living with GBM. The page can be updated with multiple posts per day, which some people find overwhelming. However, it does offer plenty of helpful information about GBM. To join, click the “Join group” button.
GBM support for family and caregivers
A private Facebook group with 1,600+ members that serves as a safe space for family members and caregivers of loved ones diagnosed with GBM. To join, click the “Join group” button.
Support for patients using Novocure’s Optune device
A private Facebook group for people with GBM or their caregivers who are either using Optune or looking for more information on it. This page is not affiliated with Novocure who makes the device in any way. Rather, it was created to give encouragement and positive reinforcement for people using or curious about Optune. People share tips and tricks about using the device which is worn on the head and which uses mild electrical fields to disrupt the progression of the tumor. The group also has a Q & A file about Optune which is available to members. To join, click the “Join group” button.
Imerman Angels One-on-one mentorship and support for others living with GBM
Imerman Angels provide one-on-one mentorship to people living with a cancer diagnosis as well as caregivers to ensure that nobody has to face cancer alone. If you request support, Imerman will partner you with a “Mentor Angel.” You can also become a mentor to provide psychosocial support, empathy and understanding to someone living with a cancer diagnosis or a caregiver.
An online support group and discussion community which connects patients, families, friends and caregivers of people living with a brain tumor for support and inspiration. It is sponsored by the American Brain Tumor Association and covers all brain tumors, not just GBM. This group is a good place to post questions about new treatments or quality of life concerns. To join click the “Join Inspire” button.
National Brain Tumor Society live online support group
An online support group called Brain Tumor Support Conversations run by and for patients and care partners of people living with a brain tumor diagnosis. The two facilitators of the group have first-hand experience of GBM: Adam Hayden was diagnosed in 2016 and Lisa O’Leary is a former care partner to her late husband Patrick who passed from the disease. The support group meets on the third Sunday of every month from 7-8 pm ET/4-5 pm PT. You can sign up here.
Brain Tumor Twitter is a social media community. It rapidly connects you with thousands of others with shared experiences. The Twitter account @BTSMchat hosts a live chat to discuss all things related to brain tumors, not just GBM, on the first Sunday of each month at 8 pm ET/5 pm PT.
Create your own community
You can also build your own community of people who love and care for you and want to help and be kept informed about your GBM journey. The website Lotsa Helping Hands offers an easy to use tool for creating your own support network online.