ALS Therapy Development Institute
Encyclopedia
The ALS Therapy Development Institute (ALS TDI) is a non-profit biotechnology company seeking effective treatments for amyotrophic lateral sclerosis
(ALS). It is a registered 501(c)(3) non-profit organization in the United States. It operates the world's largest research and development program focused on ALS.
ALS TDI has conducted pre-clinical investigations (using the G93A ALS mouse model) and efficacy studies on more potential treatments than 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 collaborators from both academia 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.
, 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. James Heywood served as the d'Arbeloff Founding Director and CEO of the Institute from 1999–2007, when he joined the board. Following Heywood's move to the Board, Sean F. Scott
was named the Institute's President. 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. He lost his own battle to ALS in 2009. Today, the Institute is run by Steven Perrin, Ph.D., a genomic expert with more than 15 years of experience in the biotech and pharma industries.
Perrin leads a team of more than 30 industry trained scientists and technicians that conduct research in the Institute's 16000 square feet (1,486.4 m²) facility in biotech rich Cambridge, Mass. Several additional organizations are in the process of mimicking the ALS TDI model, including the Scleroderma Foundation, the Myelin Repair Foundation, Autism Speaks, Michael J. Fox Foundation, and CHDI, an organization searching for medicines to treat Huntington's disease. The Institute has raised and spent nearly $60 million on research into effective treatments for ALS and published several works that have helped to further the field of neuodegenerative research, including:
Design, Power and Interpretation of Studies in the Standard Murine Model of ALS (Scott, et al., ALS Volume 9(1):4-15, 2008)
From Transcriptome Analysis to Therapeutic Anti-CD40L Treatment in the SOD1 Model of Amytrophic Lateral Sclerosis (Lincecum, et al., Nature Genetics, Volume 42, May 2010)
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.
The Institute, and the story of its origins were captured by the award-winning documentary "So Much So Fast
".
Amyotrophic lateral sclerosis
Amyotrophic lateral sclerosis , also referred to as Lou Gehrig's disease, is a form of motor neuron disease caused by the degeneration of upper and lower neurons, located in the ventral horn of the spinal cord and the cortical neurons that provide their efferent input...
(ALS). It is a registered 501(c)(3) non-profit organization in the United States. It operates the world's largest research and development program focused on ALS.
ALS TDI has conducted pre-clinical investigations (using the G93A ALS mouse model) and efficacy studies on more potential treatments than 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 collaborators from both academia and industry, most recently entering into agreements with Gene Logic, Microbix, Aptagen and the Allen Institute for Brain Science
Allen Institute for Brain Science
The Allen Institute for Brain Science is a Seattle-based nonprofit medical research organization that was launched in 2003 with a $100 million seed donation from philanthropist, founder and former Microsoft executive Paul Allen.-Overview:...
. 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.
History
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, Robert Bonazoli, and Melinda Marsh Heywood after James' brother, Stephen HeywoodStephen Heywood
Stephen Heywood was an American builder and self-taught architect, specializing in the renovation of old houses.He was diagnosed with ALS in 1998, at the age of 29...
, 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. James Heywood served as the d'Arbeloff Founding Director and CEO of the Institute from 1999–2007, when he joined the board. Following Heywood's move to the Board, Sean F. Scott
Sean F. Scott
Sean Forrester Scott was a self-educated American disease activist and researcher, filmmaker, innovator, entrepreneur and until the time of his death, the President of the ALS Therapy Development Institute, the world's largest amyotrophic lateral sclerosis research center...
was named the Institute's President. 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. He lost his own battle to ALS in 2009. Today, the Institute is run by Steven Perrin, Ph.D., a genomic expert with more than 15 years of experience in the biotech and pharma industries.
Perrin leads a team of more than 30 industry trained scientists and technicians that conduct research in the Institute's 16000 square feet (1,486.4 m²) facility in biotech rich Cambridge, Mass. Several additional organizations are in the process of mimicking the ALS TDI model, including the Scleroderma Foundation, the Myelin Repair Foundation, Autism Speaks, Michael J. Fox Foundation, and CHDI, an organization searching for medicines to treat Huntington's disease. The Institute has raised and spent nearly $60 million on research into effective treatments for ALS and published several works that have helped to further the field of neuodegenerative research, including:
Design, Power and Interpretation of Studies in the Standard Murine Model of ALS (Scott, et al., ALS Volume 9(1):4-15, 2008)
From Transcriptome Analysis to Therapeutic Anti-CD40L Treatment in the SOD1 Model of Amytrophic Lateral Sclerosis (Lincecum, et al., Nature Genetics, Volume 42, May 2010)
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
Open Data
Open data is the idea that certain data should be freely available to everyone to use and republish as they wish, without restrictions from copyright, patents or other mechanisms of control. The goals of the open data movement are similar to those of other "Open" movements such as open source, open...
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.
The Institute, and the story of its origins were captured by the award-winning documentary "So Much So Fast
So Much So Fast
So Much So Fast is a documentary written and directed by Academy Award nominees Steven Ascher and Jeanne Jordan. This film premiered in competition at the 2006 Sundance Film Festival, and won the Audience Award at the Boston Independent Film Festival....
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