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 a detached respirator in November 2006.