Stephen Heywood (April 13, 1969 – November 26, 2006) was an American builder and self-taught

architect An architect is a person who plans, designs and oversees the construction of buildings. To practice architecture means to provide services in connection with the design of buildings and the space within the site surrounding the buildings that h ...

, specializing in the renovation of old houses. He was diagnosed with

ALS Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND) or Lou Gehrig's disease, is a neurodegenerative disease that results in the progressive loss of motor neurons that control voluntary muscles. ALS is the most comm ...

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 Jonathan Weiner (born November 26, 1953) is an American writer of non-fiction books based on his biological observations, focusing particularly on evolution in the Galápagos Islands, genetics, and the environment. His latest book is ''Long for ...

, and the documentary film ''

So Much So Fast ''So Much So Fast'' is a documentary film written and directed by Academy Award nominees Steven Ascher and Jeanne Jordan. It premiered in competition at the 2006 Sundance Film Festival, and won the Audience Award at the Boston Independent Film Fe ...

'', which premiered at the 2006

Sundance Film Festival The Sundance Film Festival (formerly Utah/US Film Festival, then US Film and Video Festival) is an annual film festival organized by the Sundance Institute. It is the largest independent film festival in the United States, with more than 46,6 ...

. His brothers James Heywood and Benjamin Heywood are co-founders of a website for patients with ALS and other life-changing illnesses,

PatientsLikeMe PatientsLikeMe is the world’s largest integrated community, health management, and real-world data platform. Through PatientsLikeMe, a growing community of more than 830,000 people with over 2,900 conditions share personal stories and informat ...

; his father is the engineering professor John B. Heywood. Heywood lived in

Newton, Massachusetts Newton is a city in Middlesex County, Massachusetts, United States. It is approximately west of downtown Boston. Newton resembles a patchwork of thirteen villages, without a city center. According to the 2020 U.S. Census, the population of Ne ...

, with his wife and son until his death at age 37 from an accidentally detached respirator in November 2006.

References

External links

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 1969 births 2006 deaths Deaths from motor neuron disease Neurological disease deaths in Massachusetts People from Newton, Massachusetts Place of birth missing Place of death missing {{US-med-bio-stub