30 August 2014
Yesterday Peter Kim presented me (and Bob Stroud and Charly Craik) with the Ice Bucket Challenge. Peter and Susan Marqusee were challenged by Terry Oas. This fundraiser holds special significance for all of us because Tom Alber, our friend and my PhD advisor, recently passed away from ALS. I think that Tom would have loved the Ice Bucket Challenge.
Tom was incredibly courageous during the final years of his life. He never stopped learning about the underlying mechanisms of ALS and thinking of potential therapies. It was very painful to see him disappointed again and again by the ineffectiveness of the available treatments. Some of this disappointment is due to general difficulties in developing treatments for neurodegenerative diseases, but some of it was due to our lack of knowledge about the basic mechanisms of this disease.
I challenged Michael Eisen, Ron Vale, and Barb Zunder. Barb will help spread the message to USF. I hope that Ron will take the challenge, donate, and work to invite a top ALS researcher to create an iBioseminar or iBiomagazine video about ALS. There is a real opportunity for iBiology to use their production platform to capture the spirit of the moment. They can produce a fantastic video that describes the challenges and recent successes in understanding basic mechanisms of neurodegenerative disease.
Mike is refusing to accept the challenge to make a larger point about the relationship between funding agencies, research, and public access to research findings. I sympathize with his point. I know that Tom was always up to date on ALS research because of the journal access afforded to him as a professor at UC Berkeley. Other patients do not have this access and that is a shame. I hope that Mike will still donate to The ALS Association or to a lecture established in Tom’s memory at UC Berkeley, or both. In the meantime, here are a few open-access papers on the subject of Amyotrophic lateral sclerosis:
I’ll add more links as people send or comment on them. Fortunately, due to the hard work of people like Mike, many classic papers are now available through Pubmed Central and most journals now deposit articles after an embargo period. In diseases like ALS where it is often only a matter of a few years between diagnosis and death, an embargo of 18 months to protect journal profits seems particular unjust.comments powered by Disqus