ALS Therapy Development Institute

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.{{Cite magazine|url=https://www.newyorker.com/magazine/2000/02/07/curing-the-incurable|title=Curing the Incurable|last=Weiner|first=Jonathan|date=2000-02-07|magazine=The New Yorker|access-date=2018-02-06|issue=45|volume=75|page=64|issn=0028-792X}} 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.{{Cite web|url=http://www.alstdi.org/about-als-tdi/|title=About ALS TDI|website=ALS Therapy Development Institute|access-date=2016-06-24}}{{Cite web|url=https://www.pbs.org/wgbh/pages/frontline/somuchsofast/heywoods/foundation.html|title=The Heywood Family – The ALS Therapy Development Institute {{!}} So Much So Fast|date=2007-08-29|website=Frontline|publisher=PBS|language=en|access-date=2018-02-07}}

In 2004, the Foundation moved to a {{convert|16000|sqft|m2|adj=on}} 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.{{Cite web|url=https://tst.als.net/the-ride/|title=The Ride|website=Tri-State Trek|publisher=ALS Therapy Development Institute|access-date=2017-01-14}}{{Cite web|url=https://www.greenwichsentinel.com/2017/06/29/bikers-trek-into-greenwich-in-als-tri-state-trek-event/|title=Bikers 'Trek' Into Greenwich in ALS Tri-State Trek Event|last=Silverfarb|first=Paul|date=2017-06-29|website=Greenwich Sentiel|access-date=2018-02-07}}

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.{{Cite web|url=http://www.prnewswire.com/news-releases/als-therapy-development-institute-announces-resignation-of-ceo-james-heywood-and-appointment-to-board-58528387.html|title=ALS Therapy Development Institute Announces Resignation of CEO James Heywood and Appointment to Board|website=www.prnewswire.com|access-date=2017-01-13}} 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.{{Cite web|url=http://www.als-mda.org/research/news/070116mda_tdi_aq_als.html |title=Collaboration Funds Historic $36 Million ALS Drug Search |date=2011-05-10 |website=MDA - ALS Division |access-date=2016-06-23 |url-status=dead |archive-url=https://web.archive.org/web/20110510174017/http://www.als-mda.org/research/news/070116mda_tdi_aq_als.html |archive-date=May 10, 2011 }}{{Cite web|url=http://archive.boston.com/yourlife/health/blog/2007/01/we_wondered_who_1.html|title='We wondered who was responsible for curing' ALS – Boston Medical News – White Coat Notes – Boston.com|website=archive.boston.com|language=en|access-date=2018-02-07|archive-date=2018-02-07|archive-url=https://web.archive.org/web/20180207122826/http://archive.boston.com/yourlife/health/blog/2007/01/we_wondered_who_1.html|url-status=dead}} 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.{{Cite press release|url=http://www.prnewswire.com/news-releases/als-therapy-development-institute-receives-16-million-grant-from-the-department-of-defense-for-lou-gehrigs-disease-research-81216727.html|title=ALS Therapy Development Institute Receives $1.6 Million Grant From the Department of Defense for Lou Gehrig's Disease Research|website=PR Newswire|access-date=2016-06-24}}

Steven Perrin, previously only chief scientific officer, was appointed CEO in 2009 following the death of Sean Scott.{{Cite web|url=https://www.als.net/news/steve-perrin-phd-appointed-chief-executive-officer/|title=ALS Therapy Development Institute, the World's Largest Non-Profit Biotech, Appoints Steve Perrin, Ph.D., as Chief Executive Officer|date=2009-05-01|website=ALS TDI|access-date=2017-01-13}} In 2011, the institute moved to a new {{convert|26000|sqft|m2|adj=on}} 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.{{Cite news|url=http://www.clubindustry.com/news/augies-quest-fundraising-efforts-shift-als-therapy-development-institute|title=Augie's Quest Fundraising Efforts Shift to ALS Therapy Development Institute|date=2014-01-30|work=Club Industry|access-date=2018-02-07|archive-date=2018-02-07|archive-url=https://web.archive.org/web/20180207122805/http://www.clubindustry.com/news/augies-quest-fundraising-efforts-shift-als-therapy-development-institute|url-status=dead}} 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.{{Cite news|url=http://www.bostonmagazine.com/health/2016/01/21/als-one/|title=How One Man Brought the ALS Research Community Together – Boston Magazine|date=2016-01-21|work=Boston Magazine|access-date=2018-02-07|language=en-US}}

In 2018, ALS TDI was the original beneficiary of the ALS Pepper Challenge, where participants eat a chili pepper.{{Cite news|url=http://abc7ny.com/society/what-you-need-to-know-about-the-als-pepper-challenge/2996260/|title=What you need to know about the ALS Pepper Challenge|date=2018-01-27|work=ABC7 New York|access-date=2018-02-07|language=en-US}} 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.{{Cite news|url=http://people.com/food/als-pepper-challenge-celebrities-hot-peppers/als-pepper-challenge|title=All the Celebrities Who Have Taken on the Pepper Challenge So Far|date=2018-02-02|work=PEOPLE.com|access-date=2018-02-07|language=en-US}}{{Cite news|url=http://people.com/sports/als-pepper-challenge-shaq-charles-barkley/|title=The 'Hot' New ALS Challenge That Shaq, Charles Barkley and the Miami Heat are Getting in On|work=PEOPLE.com|access-date=2018-02-07|language=en}}

In February 2021, the ALS Therapy Development Institute moved to Watertown, MA.{{Cite web |title=ALS Therapy Development Institute Builds New Custom Lab Space in Watertown |url=https://bostonrealestatetimes.com/als-therapy-development-institute-builds-new-custom-lab-space-in-watertown/ |website=Boston Real Estate Times|date=24 February 2021 }} The new location included a lab facility allowing preclinical, clinical and transitional research to happen in one place.

In April 2021, Fernando Vieira, M.D., was appointed the chief executive officer of the ALS Therapy Development Institute by the board of directors.{{cite web | title=ALS TDI Board of Directors Appoints Fernando Vieira, M.D. as Chief Executive Officer | website=ALS Therapy Development Institute | date=2023-02-07 | url=https://www.als.net/news/fernando-vieira-m-d-as-chief-executive-officer/ | access-date=2024-07-02}}

On February 22, 2023, the chairman of the board, Augie Nieto, passed from ALS. In May, 2023, Augie's wife Lynne Nieto was elected to succeed him as board chair.

In February 2024, ALS TDI launched the [https://www.als.net/news/als-trial-navigator/ ALS Trial Navigator], in order to help people with ALS find clinical trials they qualify for.

The institute has raised and spent more than $100 million on research into effective treatments for ALS and practices open-source science.{{Cite news|url=http://www.biotech-now.org/health/2013/05/who-cares-about-als|title=Who Cares About ALS?|date=2013-05-28|newspaper=BIOtechNow|language=en-US|access-date=2017-01-13|archive-date=2017-01-18|archive-url=https://web.archive.org/web/20170118070110/http://www.biotech-now.org/health/2013/05/who-cares-about-als|url-status=dead}} 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.{{Cite news|url=https://www.wsj.com/articles/SB10001424052970204062704577221220332840952|title=Dilemma: When 1 Drug Treats 2 Diseases|last=Marcus|first=Amy Dockser|date=2012-02-14|newspaper=The Wall Street Journal|issn=0099-9660|access-date=2017-01-13}}{{Cite web|url=http://www.als.net/news/fda-approves-clinical-trial-of-tdi-132-(gilenya)-in-als-patients/|title=FDA Approves Clinical Trial of TDI-132 (Gilenya) in ALS Patients|website=ALS Therapy Development Institute|access-date=2017-01-14}}{{Cite web|url=http://www.newswise.com/articles/new-als-drug-headed-for-phase-ii-trial|title=New ALS Drug Headed for Phase II Trial|date=2013-10-25|website=Newswise|access-date=2017-01-14}}

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".{{Cite web|url=http://www.alstdi.org/precision-medicine|title=Precision Medicine Program|website=ALS Therapy Development Institute|access-date=2016-06-24}} By 2015, over 300 people had been registered and pre-screened in the program, significantly funded by money raised in the Ice Bucket Challenge.{{Cite web|url=http://www.bizjournals.com/boston/blog/bioflash/2016/04/cambridge-biotech-aims-at-a-better-way-to-test-new.html|title=Cambridge biotech aims at a better way to test new drugs for ALS|last=Seiffert|first=Don|date=2016-04-12|website=Boston Business Journals|publisher=American City Business Journals|access-date=2017-01-13}}{{Cite web|url=http://www.bizjournals.com/sanfrancisco/blog/biotech/2016/04/als-lou-gehrig-disease-denali-therapeutics-alstdi.html|title=Strength in numbers – or why a hot, young biotech and a nonprofit are taking aim at new ALS targets|last=Leuty|first=Ron|date=2016-04-04|website=Boston Business Journal|publisher=American City Business Journals|access-date=2017-01-14}}{{Cite news|url=http://www.wcvb.com/article/als-research-already-benefiting-from-ice-bucket-challenge-s-return/8225213|title=ALS research already benefiting from Ice Bucket Challenge's return|last=Riemer|first=Emily|date=2015-08-04|newspaper=WCVB|access-date=2017-01-14}}

In 2018, the Institute entered Phase I clinical trials for AT-1501, a potential treatment for ALS and Alzheimer's{{Cite web|url=https://www.als.net/at-1501/|title=AT-1501|website=ALS Therapy Development Institute|language=en|access-date=2018-11-29}} that blocks the activation of certain immune cells in order to protect nerves from ALS.{{Cite news|url=https://whdh.com/news/cambridge-non-profit-to-begin-first-human-trial-of-drug-that-could-slow-als/|title=Cambridge nonprofit to begin first human trial of drug that could slow ALS|work=WHDH 7News|access-date=2018-11-29|language=en}} The development of the drug allows ALS TDI to be viewed as a successful drug development organization.{{Cite web|url=https://www.als.net/news/first-drug-candidate-from-als-therapy-development-institute-starts-clinical-trial/|title=FIRST DRUG CANDIDATE FROM ALS THERAPY DEVELOPMENT INSTITUTE STARTS CLINICAL TRIAL|website=ALS Therapy Development Institute|language=en|access-date=2018-11-29}} ALS TDI received funding from the ALS ONE partnership to develop the drug.{{Cite web|url=http://www.alsone.org/als-organizations-collaborate-to-advance-new-therapeutic-into-trials/|title=ALS ONE|website=www.alsone.org|access-date=2018-11-29|archive-date=2018-11-30|archive-url=https://web.archive.org/web/20181130030318/http://www.alsone.org/als-organizations-collaborate-to-advance-new-therapeutic-into-trials/|url-status=dead}}

In 2020 the Institute Published "Type I PRMT Inhibition Protects Against C9ORF72 Arginine-Rich Dipeptide Repeat Toxicity" in Frontiers in Pharmacology with a follow-up paper in 2021 called "Hypothesis and Theory: Roles of Arginine Methylation in C9orf72-Mediated ALS and FTD" in Frontiers in Cellular Neuroscience.{{Cite journal |last1=Gill |first1=Anna L. |last2=Premasiri |first2=Alan S. |last3=Vieira |first3=Fernando G. |date=2021 |title=Hypothesis and Theory: Roles of Arginine Methylation in C9orf72-Mediated ALS and FTD |journal=Frontiers in Cellular Neuroscience |volume=15 |pages=633668 |doi=10.3389/fncel.2021.633668 |issn=1662-5102 |pmc=8021787 |pmid=33833668 |doi-access=free }}

In 2023, the Precision Medicine Program [https://www.als.net/news/arc-community-letter/ evolved] into what is now known as the ALS Research Collaborative (ARC). The [https://www.als.net/arc/ ARC Study], is an ongoing observational study that invites people with ALS and asymptomatic gene carriers to share their stories by contributing data about their family, work, medical history, and more. The [https://www.als.net/arc/data-commons/ ARC Data Commons], grants researchers access to over eight years of de-identified natural history data contributed by people with ALS – affording an unprecedented level of insight into this complex disease. This database will continue to grow as people with ALS contribute more data to the ongoing ALS Research Collaborative (ARC) natural history study. ALS TDI has collaborated with Google to develop two new digital biomarkers of ALS using voice recordings and accelerometer data from the ARC Study.{{Cite web |title=ALS TDI and Google Develop New ALS Symptom Severity Measurement Tool |url=https://www.als.net/news/als-tdi-and-google-researchers-share-ai-powered-als-symptom-severity-measurement-tool/ |access-date=2025-05-01 |website=ALS Therapy Development Institute |language=en}}

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Category:Research institutes established in 1999

Category:Medical and health organizations based in Massachusetts

Category:Biotechnology companies of the United States

Category:Organizations based in Cambridge, Massachusetts

Category:Amyotrophic lateral sclerosis

Category:1999 establishments in Massachusetts

Category:1999 in biotechnology