Sean Forrester Scott (May 20, 1969 – February 9, 2009) was a self-educated disease activist and researcher, filmmaker, innovator, entrepreneur and until the time of his death, the president of the

ALS Therapy Development Institute The ALS Therapy Development Institute (ALS TDI) is a non-profit biotechnology research organization focused on finding treatments for amyotrophic lateral sclerosis (ALS). With a staff including more than 30 scientists, it operates a research and de ...

, the world's largest

amyotrophic lateral sclerosis Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND) or Lou Gehrig's disease, is a neurodegenerative disease that results in the progressive loss of motor neurons that control voluntary muscles. ALS is the most comm ...

research center. Scott himself was diagnosed with ALS in 2008 at the age of 38.

Activism

Scott became active with ALS TDI 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 eventually Sean Scott too died of complications from ALS in 2009. 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 Nature, in the broadest sense, is the physics, physical world or universe. "Nature" can refer to the phenomenon, phenomena of the physical world, and also to life in general. The study of nature is a large, if not the only, part of science. ...

'' in August 2008. In 2006, Scott's effort to fund the ongoing research led him to

Augie Nieto Augustine L. Nieto II (1958 – February 22, 2023) was the founder and chief executive of Life Fitness, as well as the chairman of Augie's Quest to Cure ALS, and the ALS Therapy Development Institute. He and his wife, Lynne, lived in Corona Del ...

and Sharon Hesterlee. The ambitious $36 million partnership brokered between ALS TDI, Augie's Quest and the

Muscular Dystrophy Association The Muscular Dystrophy Association (MDA) is an American 501(c)(3) umbrella organization that works to support people with neuromuscular diseases. Founded in 1950 by Paul Cohen, who lived with muscular dystrophy, it works to combat neuromuscular di ...

, a partnership that survived 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.

Personal life

Scott was married in 2008 to longtime companion Nancy Kelly, who was also involved in ALS activism. Scott lived in

San Francisco, California San Francisco (; Spanish for " Saint Francis"), officially the City and County of San Francisco, is the commercial, financial, and cultural center of Northern California. The city proper is the fourth most populous in California and 17th ...

with his wife until his death, and is also survived by his father Richard Scott and uncle,

Edward W. Scott Edward W. "Ed" Scott Jr. is an American businessman, philanthropist, and former senior United States government official. Along with Bill Coleman and Alfred Chuang, he founded enterprise software company BEA Systems. Education Scott was educat ...

. Scott earned an undergraduate degree in rhetoric from the

University of California, Berkeley The University of California, Berkeley (UC Berkeley, Berkeley, Cal, or California) is a public land-grant research university in Berkeley, California. Established in 1868 as the University of California, it is the state's first land-grant u ...

References

1969 births 2009 deaths Neurological disease deaths in California Deaths from motor neuron disease American health activists University of California, Berkeley alumni {{US-activist-stub