Stephen Heywood was told he had ALS at the end of 1998 at age 29. His family immediately jumped into action and set out to find a treatment. After discovering there wasn't one, and sensing a lack of urgency in the research community to find a cure, the Heywood family determined that the medical research field needed serious disruption if it was to meet the urgent need felt by their family and thousands of others faced with this disease across the globe.
The result was the creation of a nonprofit biotech, innovated to combine the heart of a nonprofit mission with the entrepreneurial spirit of a biotechnology company. Today, that creation, the ALS Therapy Development Institute, is the world's largest dedicated ALS research center.
Stephen became deeply involved in ALS research as well, helping to establish the ALS Forum at ALS.net and participating in many experimental treatments, including a stem cell transplant and the insertion of a device into his head which allowed him to communicate via a computer with his thoughts alone. As an early pioneer in these areas, Stephen inspired future advancements by researchers and companies across the globe. Sadly, Stephen passed away shortly after Thanksgiving in 2006.
His father, John Heywood, and his brother, James Allen Heywood, are members of the board of directors of the ALS Therapy Development institute. The Stephen Heywood Fund provides significant funding for research through its efforts to connect newly diagnosed PALS to the Institute and leadership in helping to establish the White Coat Affair Gala, among other enduring fundraising activities of ALS.net.