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No Good Deed Goes Unpunished

Friday June 08, 2018

No Good Deed Goes Unpunished

I am passionate about medical research—especially about the brain. If you think that’s because I have a chronic and progressive neurological condition (Parkinson’s), you would be correct.  

There may be other reasons as well. Knowing that the universe operates in mysterious ways, I wonder if there is any connection to my thirteen-year-old self who saved his money from mowing lawns, so he could buy a high-quality microscope and peer into the magic and mystery of the unknown.

That makes my adventures last week almost perfect. I was asked to participate in a grant review process for the Parkinson’s Foundation. Prior to our meeting, each of us spent about 20 hours studying the research proposals—reading, trying to understand the “big words” (like mesenchymal), evaluating and scoring. These research proposals were from “post-docs” throughout the country at various elite universities and research centers.

A post-doc has recently finished a PhD: they’re looking to complete a research project, get published and get more funding so the cycle can repeat. Unfortunately, in the grand scheme, less than 25% of proposals ever get funded.

How does the process work? In this case, two people with Parkinson’s and ten scientists sat around a large conference table in an office about a block from the Empire State Building to determine who gets funding. The people with Parkinson’s may not comprehend all the hard-core science (although we do know that LRRK2 is the leucine-rich repeat kinase 2 gene that has over 20 mutations that may cause or contribute to Parkinson’s), we do know how it affects quality of life. We provided valuable input, and human faces to the research. Together, we decided how to distribute most of a million dollars!

Since I was flying to New York, anyway, I checked in with my favorite world-class Parkinson’s researcher: David Sulzer. Dave is not only the smartest guy I know, he runs a lab at Columbia University doing some of the most exciting work in the Parkinson’s arena. Luckily, he had time for lunch and a variety of topics: the politics of academia, the art of getting published, how to get funded, the National Institute of Health (NIH), mitochondria, autophagy and more. Even though I understood about half of his scientific musings, it was an incredible opportunity to learn (what I could) from a genius. I also got a private tour of lab stations and ongoing research projects. The highlight was seeing images from a $250,000 microscope. Is that cool or what?

Another reason for my visit to Columbia University was to participate in a research project. One of my least favorite activities is donating blood. So, of course, this study involved a blood draw—a lot. The plan was to collect twenty-two of those little test tubes! The purpose, as I understand it, is to get enough blood to isolate T cells that cause inflammation in the brain and may kill neurons involved in Parkinson’s.

In blood, T cells are very rare which is why they needed so much. T cells, also known as killer cells, are supposed to recognize invaders and—get ready for an official medical term—zap them. Unfortunately, they can sometimes mistake your own brain cells for invaders. In a nutshell, this research investigates Parkinson’s as an autoimmune disease. The possibilities are exciting! Could this lead to better treatments; slow or halt the progression; result in a cure? I was willing to do my part and give them my blood.

Apparently I have lousy veins—after five needle sticks, my veins decided it was enough and shut down. I was only able to fill a few of the test tubes. Better than nothing, but disappointing. Was it worthwhile? Absolutely. My blood may help move us closer to a cure. And when I share my thoughts on participating in research, I frequently quote Rabbi Hillel the Elder from over 2,000 years ago. Loosely translated, he said: “If not us, who? If not now, when?”

I was feeling smug for doing good deeds. Mother Nature stepped in to knock me down a peg or two to keep me humble. Due to weather in Minneapolis, the airport shut down and my 8-hour return trip turned into a nightmarish 32-hour odyssey that included a frenetic cab ride from LaGuardia to Kennedy Airport, sleeping on the floor of the terminal and spilling a hot cup of coffee on myself.

Karma? Maybe so. But, I did get a free upgrade to first class between New York and Seattle.

 

-A.C. Woolnough

Photo by Daniel Hjalmarsson on Unsplash

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