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 communiqué, 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.”—Amber Dance.


  1. Sean was one of the most amazing people I've ever worked with--this is a true loss to the field. Although his bachelor's degree was in rhetoric (no surprise to anyone who has ever been in an argument with Sean), he self-taught himself as much science as most Ph.D.s. He was easily one of the smartest people I've ever met, and yet he had a way of communicating with analogies that made complex science instantly relateable.

    He applied all of these talents to addressing some of the big picture problems in the field of ALS, helping to develop a state-of-the-art mouse testing facility that has sent set the standard for laboratories internationally. He was integral in turning the ALS Therapy Development Foundation into the world-class ALS Therapy Development Institute with a true R&D platform that would make a large biotech envious.

    And he managed to take his work seriously without taking himself too seriously. Sean will definitely be missed. I miss him.

    Sharon Hesterlee, Ph.D.

    SVP and Executive Director

    MDA Venture Partners

  2. This last week ALS claimed Sean Scott, a hero, a role model, and a brilliant, caring, witty, and eloquent leader. Those of us who care for patients with ALS know what a devastating disease it is. But we also know that it is truly a "nice guy's disease," and no one exemplified this more than Sean Scott. Sean gave up his own career to fight the disease that took his mother's life, and now his own. In the last several years he helped establish the ALS Therapy Development Institute with a major focus on translating the latest bench research into meaningful therapy for ALS, and his efforts together with the assembled team at ALSTDI are beginning to show the potential of providing such breakthroughs.

    We are all saddened by Sean's loss, but we also have the distinct honor and privilege of having been touched by his personal charisma, and the joy of remembering good times together.

    Perhaps Augie Nieto, the CEO of ALSTDI and another hero of mine with ALS, who is still fighting the good fight, said it in a way that will assure Sean's legacy: "Today, a light didn't go out. It lives the torch that Sean lit—a torch that burns bright and true. This torch will conquer and eliminate this cruel, insidious disease. Sean's light lives on in each of us whom he touched. We each carry Sean's light, and he lives on.”

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Webinar Citations

  1. Mice on Trial? Issues in the Design of Drug Studies

Paper Citations

  1. . Design, power, and interpretation of studies in the standard murine model of ALS. Amyotroph Lateral Scler. 2008;9(1):4-15. PubMed.
  2. . Neuroscience: Standard model. Nature. 2008 Aug 7;454(7205):682-5. PubMed.

External Citations

  1. website

Further Reading

No Available Further Reading