ALS TDI was founded as the ALS Therapy Development Foundation in 1999 by James Heywood, Robert Bonazoli, and Melinda Marsh Heywood after James' brother, Stephen Heywood, was diagnosed with the disease.. Dr. Tennore Ramesh joined ALS-TDF when his sister in law was diagnosed with ALS and setup the research facility and served as Chief Scientific Officer from inception until 2003. The organization 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 2004, the Foundation moved to a 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 started the Tri-State Trek, an annual 270-mile bike ride from Boston, Massachusetts to Greenwich, Connecticut. The Trek has since grown to include over 400 participants and has raised more than $7 million for research. In 2006 the ALS patient Augie Nieto became chairman of the board. The next year, James Heywood resigned as president but joined the board and Sean F. Scott, who ALS runs in his family, replaced him. Scott worked with Augie Nieto as well as with the Muscular Dystrophy Association to bring together the two organizations in 2007. The collaboration allowed for MDA to match ALS TDI's annual budget for three years through Nieto's initiative, Augie's Quest, though the partnership continued after that, with MDA cumulatively providing over $36 million. The same year, the organization replaced the "Foundation" part of its name with "Institute". The Institute received a $1.1 million grant from the U.S. Department of Defense in 2008 and an additional $1.6 million grant in 2010. Steven Perrin, previously only Chief Scientific Officer, was appointed CEO in 2009 following the death of Sean Scott. In 2011, the Institute moved to a new facility, also in Cambridge, allowing for the hiring of more scientists and a bigger lab. Two years later, in 2014, Augie's Quest officially transitioned from MDA to ALS TDI. The same year, ALS TDI received over $3 million through the Ice Bucket Challenge. In 2016, the Institute announced the ALS ONE partnership with Massachusetts General Hospital, Harvard Medical School, University of Massachusetts Medical School, and Compassionate Care ALS to find a treatment for ALS within four years. In 2018, ALS TDI was the original beneficiary of the ALS Pepper Challenge, where participants eat a chili pepper. Various public figures, including Kelly Clarkson, Jimmy Kimmel, Shaquille O'Neal, Nancy O'Dell, Wolf Blitzer, the Miami Heat and Andy Cohen have participated in the challenge.
Research
The Institute has raised and spent more than $100 million on research into effective treatments for ALS and practices open-source science. After the discovery that the multiple sclerosis drug Gilenya might also be a treatment for ALS, the Institute enrolled 30 people in a Phase 2A clinical trial the drug in 2013, though it did not progress further. ALS TDI launched the Precision Medicine Program in partnership with Denali Therapeutics in 2013 "to identify subgroups of ALS, potential treatments for them using patient data, genomics and iPS cell technology". By 2015, over 300 people had been registered and pre-screened in the program, significantly funded by money raised in the Ice Bucket Challenge. In 2018, the Institute entered Phase I clinical trials for AT-1501, a potential treatment for ALS and Alzheimer's that blocks the activation of certain immune cells in order to protect nerves from ALS. The development of the drug allows ALS TDI to be viewed as a successful drug development organization. ALS TDI received funding from the ALS ONE partnership to develop the drug.
