Becoming Part of a Vital Brain TumorResource

One of the most exciting Twitter resources available to the brain tumor community is the list of Twitter users by brain tumor type.  The twitter users listed here are not only the brain tumor patients themselves, but includes people impacted by brain tumors (family, friends, etc).  The idea behind the list is that people dealing with brain tumors need a place to go for empathy, support, and information and the list provides a way to try to fill that need.

For example, if you or somebody you know is diagnosed with an oligodendroglioma, the list includes @TumorWarrior (me) as someone who has that tumor type and is willing to talk about it.  The list evolves over time and it is hoped that it it will include dozens of tumor types with Twitter volunteers.

Volunteers used to try to describe their condition and experience by tweet.  Obviously, the 140 character limits created lots of challenges.  So whether it you or somebody you know, follow these two easy steps to be listed.

  1. Comment on this post with your information in as much detail as you care (I do reserve the right to edit it), being sure to leave your twitter name
  2. Cut, paste, and tweet the following: “I volunteered 4 the brain tumor list organized by brain tumor type by commenting on #TumorList

The tweet is important because it will alert me that there is a new volunteer for me to add to the list.  At some point thereafter I will start the process of getting you listed (I will try to be prompt, but will eventually get to it).  After you have been added to the list, I will notify you.  Please let me know of any corrections needed and I will change your listing as my schedule allows.

Thank you in advance for helping develop this list


2 thoughts on “Becoming Part of a Vital Brain TumorResource

  1. Hi Lou! Wondering if we could make a change in my profile! @Cangela25 – Gliomatosis Cerebri (Grade 2 or 3) Dx in May 2013. Tumor is mostly located in left and right frontal lobes as well as in the left temporal lobe. Thanks!

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