Rapid Case of ALS Claims Sean Forrester Scott, 1969-2009

The battle against amyotrophic lateral sclerosis (ALS) lost a soldier Monday when Sean Forrester Scott, president of the ALS Therapy Development Institute (ALS TDI) in Cambridge, Massachusetts, died in his sleep from complications of the disease. He was 39.

Scott announced his own demise in a posthumous e-mail sent to family and friends, in which he asked them to remember him not as a victim, but as a fighter who was killed in action while working to find a treatment for the disease. ALS TDI, a nonprofit devoted to therapy development and patient assistance, posted excerpts from that message on its website.

I can’t tell you how much of a loss for the field it is, said Steven Perrin, chief scientific officer at ALS TDI. ALS ran in Scott’s family, and he threw himself into the fray when his mother was diagnosed in 2001. With no background in science, he really taught himself the process of drug development, Perrin said. Scott helped transform ALS TDI into a nonprofit version of a pharmaceutical company, leading the organization to screen for drugs that might beat back the relentless neurodegeneration of ALS. Scott also worked to expose limitations of the most popular model for ALS, mice expressing mutant superoxide dismutase (Scott et al., 2008; see also a Nature article on the topic). Although mouse experiments have identified several potential therapeutics, none of these have been effective in people. Scott led an Alzforum live discussion on this issue last May.

Scott was diagnosed with ALS in early 2008, and his condition progressed quickly. In his final communiqu, he wrote: Just last year I was worried about turning 40. Now it appears I’ll never have the chance. It’s both surreal and horrifying to watch as muscles fail and with them skills that you spent a lifetime developing simply disappear.

To view commentaries, primary articles and linked stories, go to the original posting on Alzforum.org here.

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