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!
Transcript of my talk at Stanford Medicine X
This person who gave me almost nothing in life has given me so much more with his death. And for this, I am thankful. So there is no reason to be sorry for my loss.
When your first thought is, "Let's participate in research!"
Little did I know that my human genome is too large to send via email, but I was able to download it from my 23andMe account, upload it to Google Drive and share the link with the study.
That one time I put my blood in my refrigerator so I could participate in research
I am so used to this life it does not freak me out anymore.
Gliogene: Studying people who have two or more family members with glioma brain tumors
If you and another person in your family have been diagnosed with a malignant brain tumor (e.g. glioblastoma, astrocytoma), you might be eligible for the Gliogene study.