My world is on fire

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So many things have happened.

  • Emily died.

  • I lobbied for the oral chemo parity bill in Washington, DC, with awesome advocates from California.

  • I visited my Congressman's office (just 10 miles from my house) in August.

  • No bill has passed.

  • I went to the National Brain Tumor Society annual summit in October in Boston. They presented Emily with a posthumous award. Her parents accepted and I bawled my eyes out.

  • Charlie and I planned an entire year's worth of #BTSM tweet chats and inspired each other.

  • Then David died.

  • I applied to Stanford's Medicine X conference as an ePatient and did not make the cut. (But Charlie made the cut, FTW!)

  • Then Brittany Maynard. That is a sentence on its own.

  • Then that freshman basketballer played her first and only game.

My world is on fire for people with brain tumors.

Every day I think about something I need to write. A story I need to tell... to you. Whomever is reading this sentence. I think about you every day but my rule is to not write unless I can do a post justice. And this is really a cop-out post.

So for now, here is this video. A recent rant captured on video by the National Brain Tumor Society. When I said these words I was angry about people who are angry about the lack of "awareness" for brain tumors. I get angry that people think our disease is slighted for some reason. The truth is, there are things you can do and you just need to get out there and do something. Let me know if I need to write another tutorial.

If you like this video send $10 to the National Brain Tumor Society for supporting my habit.

Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
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I wish Brittany Maynard had met other 29-year-olds with brain cancer

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Emily Morrison