Sean Forrester Scott (May 20, 1969 – February 9, 2009) was a self-educated American disease activist and researcher, filmmaker, innovator, entrepreneur and until the time of his death, the President of the ALS Therapy Development Institute, the world's largest amyotrophic lateral sclerosis (ALS/Lou Gehrig’s disease) research center. Scott himself was diagnosed with ALS in 2008 at the age of 38.
Scott became active with ALSTDI when his mother Vanna was diagnosed with ALS in 2001. Four more of Vanna's seven siblings succumbed to the familial form of the disease by 2007, and Sean Scott eventually was diagnosed with the disease himself, which resulted in his death in 2009. Beginning as a volunteer, Scott assumed the management and direction of the research and development program. He quickly became a leader, teaching himself neurobiology and reading the anthology of publications on potential therapeutics. Under his leadership, the research organization pioneered new pharmacological, surgical, study design and statistical techniques for study of the G93A-SOD1 mouse model of the disease.
In 2008, Scott was lead author of a landmark publication in The Journal Amyotrophic Lateral Sclerosis that described guidelines for experimental design of studies evaluating therapeutics in the mouse model. The work identified crucial errors present in many existing preclinical ALS studies. Scott’s effort to establish standard model guidelines for preclinical development in ALS was featured in Nature in August 2008. Scott also developed an information management system used by researchers allowing for greater collaboration between research groups and the streamlining of experiments and processes. He focused on building the system and infrastructure needed to execute the largest ALS assault possible. With a system in place and working, Scott focused on ensuring scientists in the lab had the resources required to act on the best ideas quickly, and sought out the funding needed to speed up the process.
In 2006, Scott’s effort to fund the ongoing research led him to Augie Nieto and Sharon Hesterlee. The ambitious $36 million partnership brokered between ALSTDI, Augie’s Quest and the Muscular Dystrophy Association, a partnership that survives Scott, allowed for major expansion of the institute’s efforts to include the identification of genes that behave unusually in ALS and to determine how those differences affect the disease.
An unconventional and visionary leader in the ALS research field, Scott was married in 2008 to Nancy Kelly his longtime companion, who also devoted herself to ALS activism. Scott lived in San Francisco, California with his wife until his death, and is also survived by his father Richard Scott and uncle, Edward W. Scott.
Scott earned an undergraduate degree in rhetoric from the University of California, Berkeley.
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