ALS Therapy Development Institute
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| Abbreviation | ALS TDI |
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| Founded | 1999 |
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| Type | non-profit biotech |
| 04-3462719 | |
| Purpose | "to discover and develop effective treatments for ALS, Lou Gehrig's disease." |
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Key people
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| Affiliations | International Alliance of ALS/MND Associations |
| Website | als.net |
The ALS Therapy Development Institute (ALS TDI) is a non-profit biotechnology research organization focused on finding effective treatments for amyotrophic lateral sclerosis (ALS). With a staff including more than 25 scientists, it operates the world's largest research and development program focused on ALS.
ALS TDI was founded as the ALS Therapy Development Foundation (ALS TDF) in 1999 by James Heywood, Robert Bonazoli, and Melinda Marsh Heywood after James' brother, Stephen Heywood, was diagnosed with the disease. The foundation was initially funded through a donation from Stephen, as well as one from Alex and Brit d'Arbeloff. The Foundation's first therapy concept was to replace EAAT2 protein using gene therapy.
In 2001, the Foundation opened its first lab at the New England Medical Center and tested 27 drugs in the SOD1 mouse with two successes. The organization also received approval to conduct the world’s first stem cell trial for ALS. Then, in 2004, the Foundation moved to a 16,000-square-foot (1,500 m2) location in Cambridge, Massachusetts with an in-house lab. ALS TDF constructed a biosafety level 2 lab in 2005, allowing for the expansion of "gene therapy and cell-based treatment pipelines."
In 2005, the Foundation became the beneficiary the Tri-State Trek, a 270-mile bike ride from Boston to New York founded in 2003. Fitness pioneer and ALS patient Augie Nieto also became chairman of the board. The Trek has grown to include over 400 participants and has raised more than $7 million for research.
Heywood served as founding director and CEO of the Foundation through 2007, when he joined the board. Following Heywood's move to the Board, Sean F. Scott, who ALS runs in his family, was named CEO. Augie Nieto worked with Scott, as well as with Sharon Hesterlee, the Vice President of Translational Research at MDA, to bring together the two organizations in 2007. As a result, TDI would received $36 million from MDA through Nieto's initiative, Augie's Quest. In addition, the organization replaced the "Foundation" part of its name with "Institute".
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