Our Story

In December of 1998, Stephen Heywood was diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's disease. The prognosis was devastating: Stephen would experience a rapidly progressive paralysis that doctors could neither explain nor cure, leaving him a prisoner in his own body. Unable to walk, speak, or even breathe independently, Stephen would die of respiratory failure within five years. He was 29 years old.

In a race against time to save his brother Stephen's life, James Heywood left his position as Director of Technology Development at the Neuroscience Institute and, with the support of his family and friends, founded the world's first ALS-focused nonprofit biotechnology company from his parent's basement in a Boston suburb. Along with James, Stephen’s long-time friend Robert Bonazoli and Melinda Marsh Heywood founded ALS TDF (now The ALS Therapy Development Institute) and began offering hope to people living with ALS.

ALS TDI operates out of a high-tech research facility where a dedicated team of researchers and staff search each day for a treatment and cure on behalf of all of today's ALS patients.

In 2007 ALS TDF became The ALS Therapy Development Institute and intensified its research program made possible in large part due to a grant awarded by the Muscular Dystrophy Association’s Augie’s Quest. This grant, the single largest of its kind ever awarded by the MDA, together with the continued support of hundreds of ALS patients and their families worldwide, continues to enable ALS TDI to ramp up its research program substantially.

Eight years later, one man's personal tragedy now provides hope for thousands of people suffering from ALS and points to new possibilities for fighting other neurological disorders.

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