Patient & Researcher Blog

Here I aim to capture what I am learning as a newbie researcher from a patient perspective.

Living with a slow growing brain cancer

It is taboo for researchers to talk about their work before it is published.

I think that’s a bummer.

 

My favorite part about research is learning new things in real time. Here I share my observations as a learner and my n of 1 (personal) findings as a patient.

Note: I started blogging about brain cancer in 2008, at age 29.

I had no background or knowledge about healthcare when I began. Please excuse typos and other misconceptions. What you read here is me in real time, like a time capsule.

There are more than 500 posts here. Use this search to look for something specific. Good luck!

Advocacy Liz Salmi Advocacy Liz Salmi

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

Can you imagine Kitchen Aid selling a $350.00 Artisan Series stand mixer for our cause? Delta Airlines inspiring research dollars for painting an airbus gray? An NFL referee drawing attention to the disease by dropping a gray flag? Because I can't. Even brain tumor nonprofits don't even bother asking us to wear gray during fundraising walks and events.

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Advocacy Liz Salmi Advocacy Liz Salmi

Top 10 reasons I am a brain tumor advocate

This week I joined with hundreds of my fellow brain tumor advocates from around the country in Washington, DC, to attend the annual “Head to the Hill” lobby day organized by the National Brain Tumor Society. This is the second year in a row I've traveled to our nation’s capital to educate our members of Congress on critical issues currently facing the brain tumor community.

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Surviving, Advocacy Liz Salmi Surviving, Advocacy Liz Salmi

Brain tumor advocacy in full swing: it's time to educate Congress

There are people who are mortgaging their homes just to get their kids the Temodar they need. Some people are skipping their treatment and using it only every other month.So you can imagine what a blessing it would be to brain cancer patients everywhere if our chemotherapy was treated the same way as chemo for every other cancer patient. For reasons unknown to me, we are being discriminated against, and this is not OK.

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