I was challenged to do the ALS (amyotrophic lateral sclerosis) ice bucket challenge, but not in the conventional way. The friend who nominated two other people and me graciously gave us 674968 hours to “NOT do a video (though you can if you have the unstoppable urge to throw water on your head) and instead to donate to a charity of your choice”. He is an enigmatic person full of whimsy and paradoxes with a hint of maniacal genius. On top of upturning a bucket of ice cold water over his head in a completely unfazed manner as a sort of side note during his video, he improvised on his violin for two minutes, gracing us with his musical talent. See for yourself:
The whole #IceBucketChallenge makes me slightly nervous, I must admit. On the one hand, it is an admirable thing to raise awareness for motor neurone diseases (MNDs), of which ALS is one, and to prompt people to donate to charities such as the MND Association (primarily based in England) and the ALS Association (USA). However, I wonder how much the people doing these challenges actually know about the diseases: their symptoms, causes and treatments. As far as I can discern from reading the charity websites a lot of the donated money goes into improving patient care, and although this is unarguably the most urgent frontier to which the funds should be allocated, it is also important to think about basic research into ALS. For example, I doubt that most people who did do the challenge (and may or may not have donated) know that experimenting with the brains of fruit flies can lead to new insights into disease pathogenesis (the development of disease), aetiology (the cause of disease) and possibly even reveal a long sought-after diagnostic marker for ALS.
At this point I ought to admit that I also did not know that basic ALS research can be done in Drosophila melanogaster, but my summer internship at Cold Spring Harbor Laboratory (CSHL) was enlightening in this respect. For example, the lab of Joshua Dubnau (http://dubnaulab.cshl.edu/research_projects/neurodegeneration.html) uses fruit flies (and other models) to investigate the role of the protein TDP-43 in ALS and related frontotemporal lobe degeneration, whose gene is mutated in both familial and sporadic versions of the diseases (for a recent review see Robberecht and Philips (2013) Nature Reviews Neuroscience). Although I am not trying to advocate that we donate to CSHL instead, I think it’s important to be aware that basic (animal) research, which, on the face of it, may not seem important to members of the lay public can very often be justified because it will benefit people in the long run.
Lastly, the ice bucket challenge seems wasteful since a large proportion of the world’s population does not have access to clean water. So when Matt Damon was challenged by Ben Affleck and Jimmy Kimmel he decided to use water from the toilets in his house, commenting that that water was still relatively clean compared to what some people have to drink (http://time.com/3181818/als-ice-bucket-challenge-matt-damon-uses-toilet-water/). For others, such as Stephen Hawking who suffers from an MND similar to ALS, pouring ice cold water over one’s head is not exactly conducive to good health. To circumvent this problem the physicist was able to convince his children to do the challenge for him and subsequently nominated the director of the Science Museum in London and the Chancellor and Vice-Chancellor of the University of Cambridge (http://www.independent.co.uk/news/people/stephen-hawking-mnd-sufferer-does-ice-bucket-challenge-with-a-twist-9698539.html).
ALS, also known as Lou Gehrig’s disease, is a rare yet devastating disease, which progresses from muscle weakness and atrophy to difficulties speaking and breathing, and eventually to death. There is currently no cure for ALS, only treatments that improve the quality of life for patients, and therefore knowledge of the exact disease mechanism(s) is vital because only then can drugs be more rationally designed.
Now I will go and donate to Forum ALS, the Austrian equivalent of the ALS Association: a recent news article (http://derstandard.at/2000004617183/Amyotrophe-Lateralsklerose-Etwa-800-Betroffene-in-Oesterreich) seems to indicate that this organisation has been receiving more interview enquiries but not more donations since the ice bucket challenge went viral.