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Stephen Heywood dies:

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December 2,2006

To All Members,

Stephen Heywood, 37, Star of Film on A.L.S., Dies

Published: November 30, 2006
NEWTON, Mass., Nov. 29 (AP) — Stephen Heywood, whose fight against Lou Gehrig’s disease was chronicled in the documentary film “So Much So Fast,” died on Sunday at his home here after an eight-year struggle with the disease. He was 37.

The cause was an accidental disconnection of a circuit on a ventilator that had helped keep him alive, said his brother James Allen Heywood.

The documentary, released last month, is a five-year record of his family’s battle with the disease, formally known as amyotrophic lateral sclerosis. It was written, directed and produced by Steven Ascher and Jeanne Jordan.

Stephen and James Heywood started the ALS Therapy Development Foundation in 1999 after Stephen learned he had A.L.S. in December 1998. The foundation is devoted to treating the disease, which gradually destroys the ability to control movement. Patients lose their ability to move or speak, but their minds remain unaffected.

Mr. Heywood allowed stem cells to be injected into his spinal column in experiments. He also took part in genetic studies and clinical trials for new drugs and received a brain implant to test how A.L.S. patients’ thoughts could be used to control a wheelchair and other robotic objects.

Mr. Heywood was born in Newton. He graduated from Colgate University in Hamilton, N.Y., in 1992. He went on to design and build homes in California, and returned to Newton after his A.L.S. was diagnosed.




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What an inspirational man. Maybe his allowing himself to be used for experimentation will benefit others in the future. That would be a great legacy.

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