When your first thought is, "Let's participate in research!"

IMAGE: Some graphic I totally stole from the Gliogene website.

Let's go back to a few weeks ago when I first found out my dad had brain cancer.

I was in an all day brainstorm session at work (no pun intended), when I saw that my mom was calling me. She never calls me in the middle of the day so I knew something was up.

I took the call outside and she gave me the run down.

He was acting strangely. My dad's roommate had him taken to the hospital. He had a bad fall. He was having problems communicating verbally. Due to the speech issues they did a CT scan of his brain which revealed a large mass in his frontal lobe. A neurosurgeon was brought in to assess the situation. Due to a pacemaker my dad can't have an MRI, however, the CT revealed that the mass was pushing over the midline and it appeared consistent with a glioblastoma. Due to the size of the mass and the fact that it was now pushing into the midline, and the fact that my dad is 72, surgery was not recommended. He was eligible for radiation and chemotherapy, which my dad refused. 

As the story unfolded I got more and more excited. I was like, "Is this going where I think this is going?!"

My excitement had nothing to do with me wanting my dad to have brain cancer.

I think the excitement can best be described as: I realized that there was a problem, and I happened to be a subject matter expert in said problem.

After getting off the phone with my mom I stayed outside and did what any rational daughter would do after finding out her dad has brain cancer.

I made a call to the Baylor College of Medicine and said I would like to participate in the Gliogene research study. (UPDATE in 2020: The Gliogene Lab has since moved to Stanford University.)

What is Gliogene?

According to their website, Gliogene is the largest study ever to be conducted on familial gliomas, or primary brain tumors. Researchers aim to screen approximately 15,000 individuals worldwide during the five-year study.

If you and a close family member both have brain tumors you can participate too! Give them a call.

I had heard about this study back in 2010 and contacted them after my maternal grandfather died at age 88 from a brain mass (read my post about that experience here). Unfortunately, I found out about the study too late and was unable to get a DNA sample from my grandfather, so I was not able to be a true participant.

Fortunately, Gliogene still had my personal information in their system from 2010 and they didn't need a blood sample from me--they still had my DNA on file! Go science!

While on the phone with Gliogene, the person asked me how long ago my father was diagnosed. "Like, just now," I said. As soon as the words came out of my mouth I realized how insane I am to immediately call Baylor. This person must think I am a psychopath.

I tried to explain myself. "That must sound crazy. I am really involved with the brain tumor community. I'm on the medical advisory board for the National Brain Tumor Society so I know about all kinds of stuff, so I immediately thought to call you guys." I felt like I was digging a deeper hole. When a person says all kinds of stuff they don't sound too knowledgeable, do they?

There were no judgements from Gliogene. They sent out a blood sample kit and after things settled down for my dad blood was drawn and it is now with their team.

That one time I uploaded my genome to Google Drive

One of the reasons Gliogene needs a blood sample is because they are looking for markers in our DNA that might find a genetic link for gliomas.

In my excitement I started Googling news about Gliogene's progress and I stumbled across a press release dated December 2014 that said the study had identified a mutation in a particular protein (or something like that) and it looked like a promising find for their research.

I got excited because I have account with 23andMe that allows me to scroll around through my genome and look for DNA things (not that I really know what I am looking at). I was so excited that I emailed Gliogene at 2 a.m. and told them about how I am a big fan of 23andMe and that if they were interested I could download my genome and email it to them. Gliogene was stoked!

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. I was pretty stoked that my 23andMe account served a higher purpose beyond my own curiosity and entertainment.

How many times can one say stoked about their genome?

Why the hell am I doing this?

I don't know. I like science. I want to be helpful. I am not a neuroscientist or a geneticist, but if I can contribute by giving researchers access to the data they need I am all for it.

One of the hardest parts about having finished treatment, but still living with brain cancer, is that there is nothing I can actively do to make the disease go away.

By participating in genetic studies and sharing my data I feel like I can play an active role in helping solve a puzzle that has been plaguing my life for nearly eight years.