Buckets of water and ice

Summer is the funnest, easiest time of year. First, there’s the delightful sun and heat that we miss during the rather wet Oregon fall, winter and early spring that enables us to wear any shoe we wish (within reason) and not risk walking around all day with wet feet. Second, and best of all, you can be in lab all day, everyday and never be interrupted by classes or seminars or journal clubs…it is just you, a bench, and your experiment, the way nature intended. Third, there’s the excitement of all that happens in nerd culture during the summer:

1. Highly anticipated movies like the amazingly inspiring space opera that is Guardians of the Galaxy and its subsequent stellar (see what I did there?) soundtrack.

2. Videos of San Diego Comic-Con panels on a variety of topics from what Buzz Aldrin thinks about the future of NASA and a possible Mars colony to Game of Thrones, and finding out that art imitates life in that Kit Harrington really does not say a whole lot both onscreen and offscreen. Oh, and of course pictures of the cosplayers.

3. The highly debated topic of what the song of the summer really is going to be (spoiler alert, it is not “Come and Get Your Love,” but it should be).

4. The knowledge that shows that air in the winter, like Vikings and Game of Thrones, are filming their next season. EEEK!

5. Book signings at Powell’s which, I admit, is a year-round event. But I got to meet Deborah Harkness and tell her how much I love A Discovery of Witches in July, so I am going to include it on this list (she is definitely one of my spirit animals)!

All these things we know are going to happen and anticipate every year, sometimes more than we (or I) anticipate Christmas or neurosciences. And then there are the things that completely take you by surprise. In my case, that something is the ALS Ice Bucket Challenge. I study ALS. More specifically, I study the mechanisms of a loss of crawling behavior in a Drosophila model of ALS. Basically there is a protein in humans called TDP-43 whose loss of function is associated with ALS. Fruit flies have a version of this protein, called TBPH. When you knock-out TBPH in flies, they die as adults and as larvae they do not crawl well at all.

Why, you might ask? How, you might ask? I’m working on that. But all of this research is done with the broad goals to a) understand mechanisms of the disease pathogenesis and b) identify therapeutic targets. So, I study ALS. Not cancer, which is very studied at OHSU, and not something cardiac related. I study a disease that has no cure or effective treatment, a disease that has a life expectancy of 2-5  years after diagnosis, a disease where you know exactly how you will deteriorate and die but are powerless to do anything to stop it.

This last May my mentor presented a talk, along with two other research scientists from Oregon State and Providence, at the ALS Research Forum hosted by the Oregon and SW Washington Chapter of the ALS Association. I went, along with a post-doc in the lab whom I will call “J.” In a conference room by Moda, we sat among patients, their families, and others with connections or interests in the disease. Some patients were early stage and asked lots of questions about what is known about the disease pathogenesis and treatments. Some patients were late stage, wheelchair bound and on respirators, communicating to their loved ones through touchscreens because they could not talk. After my mentor’s talk, during which he presented data from both myself and J, a man came up to us and thanked us for all our work. Needless to say my motivation had never been stronger to get back to lab.

Now, I have many other friends who work on some aspect of cancer who have had similar experiences at cancer walks and runs and meeting cancer patients. But whereas cancer gets entire campaigns devoted to raising money for its research, ALS does not. Until now. I first heard about the ice bucket challenge a week ago while listening to Elvis Duran and the Morning Show, a radio show from New York I highly recommend checking out. Since then, it has become HUGE, and some of my favorite obsessions have been challenged and have posted videos. Here are a few that I particularly love:

Tom Hiddleston (aka Loki):

Chris Pratt (aka Star-Lord):

Chris Hemsworth (aka Thor):

Robert Downey Jr. (aka Iron Man):

Kermit the Frog (aka Pesky Amphibian):

Benedict Cumberbatch (aka Kahn, Sherlock, and Smaug):

Of course the challenged are not just celebrities, and the videos posted by those living with the disease have a heightened potency to their message. I found this one particularly moving (especially at 1:58):

Since the ice bucket challenge started, the ALS Association has raised $41.8 million compared to $2.1 million at the same time (August 21st) last year. This difference is staggering and encouraging for the future.

Researchers are a funny subculture. We are tinkers and thinkers, artists and builders. We are nerds in the sense that we tend to be obsessive, sometimes possessive, and our obsessions can be anything from pop culture to hiking, brewing, counter culture, tech, scifi, history, alchemy or work. Our work has the potential to be life changing. When we are sitting at the bench, getting the publication is the immediate goal of most experiments. It is amazing to know, and important to remember, that our work has a greater potential to help suffering people. I will leave you now with a newly rediscovered obsession of mine – seriously, the Guardians of the Galaxy is amazing:


2 responses to “Buckets of water and ice

  1. Come and Get Your Love certainly SHOULD BE the song of the summer. It is in my world. Glad to know it is in yours too. And keep up that ALS research!

  2. Thanks Kayly for raising awareness of ALS, and for your work in this area. My husband and I lost a dear friend this summer from ALS. It was a shocking diagnosis and even worse death. Bring on the ice buckets!

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