As I transfer a terabyte of data from my OpenNotes (work) laptop to my new (school) laptop, I'm running across fragments of unpublished blog posts about my life between 2017 and 2026. Here's a post I never shared, outlining my whirlwind new life after I quit my job to join the full-time world of patient-partnered research.

As more and more pathologists and doctors begin treating patients based on the genome of their tumor it only makes sense for the WHO to update their classification of CNS tumors. Because science.

That was the weirdest fucking goodbye of my entire life.

A few months ago I started to wonder if I should be doing all these things I am doing in the brain tumor community. Through this work I am fighting and fighting and fighting. I have been fighting since July 2008, and all of this fighting has taken a toll.

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.

“Whatever you're doing today… Take a minute for me,” she wrote. “Now put you’re heart in it and do it better.”

And if my next MRI shows tumor growth I can say, "Well, I am sure glad I took that crazy trip to Japan." 

As people passionate about brain tumors, we can shout about the existence of brain tumors until we are blue in the face, but without follow-up actions an “awareness” campaign falls flat and leaves patients and families feeling hopeless.

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.