Sean Scott, president of the MDA-supported ALS Therapy Development Institute (ALS TDI) in Cambridge, Mass., died on Feb. 9, after a relatively short battle with ALS, which also took the life of his mother.
Scott, 39, came to the ALS TDI as a volunteer in 2000 and quickly took the helm in developing its program, particularly the software that tracks the Institute’s research pipeline and helps it allocate resources.
He and his mother both had the SOD1-related familial form of ALS, which affects from 1 percent to 3 percent of those with the disease.
“ALS is a hell of a disease,” Scott wrote in an e-mail message to close friends and relatives composed shortly before his death.
“I spent the last decade building an infrastructure to combat this disease. I had declared war on it, but in the end it got me first. At a minimum, I think I earned the right to be referred to as KIA [killed in action] and not a victim. I’d prefer that you remember me that way.”