Open thread: What does "supporting a cure" for brain cancer look like to you?

PHOTO: Shout out to @CraigClarke on Instagram for this great photo of his wife currently in treatment. (RIP)

PHOTO: Shout out to @CraigClarke on Instagram for this great photo of his wife currently in treatment. (RIP)

Recently a woman posted a comment to one of my blog posts expressing her frustration with business as usual when it comes to brain tumor treatment.

She said:

I want to start supporting a cure, and am very interested to hear new and promising avenues of treatment besides traditional chemo and radiation.

She brings up a good point about chemo and radiation (and surgery). For the most part, none of us are truly cured--these are merely stop-gap measures to slow our tumor growth and buy us time until the next treatment is available.

But what piqued my interest is the first part of her statement: I want to start supporting a cure.

What does supporting/finding a cure look like?

To me "supporting a cure" is being an advocate with the National Brain Tumor Society. I enjoy public policy and am a fan of the West Wing (which qualifies me to talk to Congress) (not really), so being an advocate is how I am supporting a cure.

But that is just one way to support a cure, and it is one of the more extreme ways. But I want to know what you think... What does supporting a cure to brain cancer look like to you?

Is it wearing a gray ribbon? Taking part in a walk? Donating some money? Driving a friend to treatment? Tweeting about brain tumor symptoms on Twitter?

There are no wrong answers. I am just curious.

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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Zero shades of gray: Who's to blame for lack of brain cancer awareness? (CureToday.com)

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What would you say to the most influential people in the brain tumor community?