ALS TDI has conducted pre-clinical investigations and efficacy studies on more potential treatments then any other research facility. Many of the findings from these tests are posted online with data freely available. The Institute has worked with dozens of collaboraters from both acadeamia and industry, most recently entering into agreements with Gene Logic, Microbix, Aptagen and the Allen Institute for Brain Science. Through its partnerships and the organization of significant research talent at its facility, the Institute is focusing resources on using powerful genomic and proteomic information to stop the disease.
In 2007, ALS TDI changed its name to ALS TDI from ALS Therapy Development Foundation (ALS TDF) corresponding with a major grant and research partnership with the MDA's Augie's Quest. ALS TDI was founded in 1999 by James Heywood after James' brother, Stephen Heywood, was diagnosed with the disease. Today, the Institute is run by Sean Scott (President) and Augie Nieto (Chairman of the Board). Sean's family has a history of ALS caused by an inherited form of the neurodegenerative disease. Mr. Nieto, a fitness pioneer and ALS patient himself, worked with Sean and MDA VP of Translational Research, Sharon Hesterlee, to bring together the MDA and ALS TDI in 2007.
Chief scientific officer, Steven Perrin, Ph.D. leads a team of more than 30 industry trained scientists and technicians that conduct research in the Institute's facility in biotech rich Cambridge, Mass.
ALS, also known as Lou Gehrig’s disease, is a neurodegenerative disorder that paralyzes the body but leaves the mind intact. ALS is not rare; 350,000 patients have it worldwide. Patients live on average two-to-five years following diagnosis. There is no cure and no effective treatment.
ALS TDI practices open-source science and maintains a patient and research-focused discussion forum. Some of the Institute's funding comes from grassroots fundraising events organized by ALS patients, their families and supporters.