He was diagnosed with ALS in 1998, at the age of 29. He was the subject of His Brother's Keeper: A Story from the Edge of Medicine, written by the Pulitzer Prize-winning author Jonathan Weiner, and the documentary film, So Much So Fast, which premiered at the 2006 Sundance Film Festival.
Stephen Heywood was a catalyst in the ALS research field, driving scientists and leaders to find effective treatments for ALS patients. He is survived by his wife, Wendy (Stacy) Heywood, and son, Alexander Stephen Heywood; two brothers, James Heywood, and Benjamin Heywood, co-founder of a website for patients with ALS and other life-changing illnesses, PatientsLikeMe.; and his parents, John Heywood, Sun Jae Professor of Mechanical Engineering, and Peggy (Gilkerson) Heywood.
Stephen lived in Newton, Massachusetts, with his wife and son until his death at age 37. He died from an accidentally detached respirator in November 2006.
- So Much So Fast Frontline
- PatientsLikeMe.com, a website for patients with ALS and other life-altering conditions, set up by Stephen's brothers Jamie and Ben Heywood
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