It occurred to me today that when I was new to this world of brain cancer, it was quite an overwhelming place. With the internet, there are countless resources out there, but it is very hard to know where to really connect. So today, #BrainTumorThursday, I thought I would address a couple of ways to connect with others in the brain cancer community.

First, there are two hashtags that are quite popular on Twitter for brain cancer. The first is #BrainTumorThursday, and each Thursday, people will post about brain tumors. The second is #btsm, which stands for “brain tumor social media”. People who are passionate about the cause use these hashtags, and even “meet up” one Sunday a month on Twitter to talk about issues.

On Facebook, there are quite a few groups that deal with very specific tumor types and are geared toward survivors and/or caregivers. Search under specific tumor types (GBM or DIPG, for example) or just type in “brain cancer”. You will find others who are fighting similar battles, and the at large “brain cancer family” is a very supportive group.

On Pinterest, there is a growing movement of brain cancer awareness. It’s a good place to find some images to use during brain cancer awareness month (May). I’ve posted some images here: http://www.pinterest.com/haddock/brain-cancer-awareness-dragon-master-foundation-sp/

I know that there are people active on other social media sites as well, but I’m not as active on those. lf you have some good social sites/pages to share, please post them below.

Lastly, there is a movement very dear to me by my good friend, Alex Moore, to raise money for his film about a brain cancer survivor. I re-blogged Alex’s post about his film, but I wanted to mention it here because I think it will be such a valuable resource for families. A survivor himself, Alex will be able to tell the story in a way no other storyteller could do. I’ve had the privilege of reading Alex’s tribute to lost warriors (my son included) along with the stories of hope he has encountered along his path. I hope that you will check out his project and consider sharing it with others who would like to bring awareness to brain cancer. You can read about the project here: http://www.gofundme.com/aimoore

5 thoughts on “#BrainTumorThursday

  1. Hi Amanda I’ve made a few changes to my story about megan for your august 10 blog. Can I resend? And where to? Will miss you all in dc next month. Hope you get to meet dorothy from illinois whose daughter amber moosvi recently passed away. Her story sounds so much like yours and mine. Thanks for all you do for the brain tumor world. Sue Jarvis

    Sent from my iPhone


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