ALS Therapy Development Institute

A Nonprofit ALS Research Institute

We were founded by a family with ALS, and our research is funded by the ALS community.

A Nonprofit ALS Research Institute

We were founded by a family with ALS, and our research is funded by the ALS community.

Founded by a Family

Stephen Heywood was diagnosed with ALS at age 29. After finding no treatment options, his brother, Jamie Heywood, realized that a gap existed in the preclinical development of therapies for ALS.

In 1999, Jamie founded the ALS Therapy Development Foundation, now the ALS Therapy Development Institute (ALS TDI), in the basement of his family's Newton, MA home in an effort to bridge this gap and bring effective treatments to people with ALS as quickly as possible.

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The Heywood family visiting our labs in 2019.

The original "lab" founded in 1999 in the Heywood family's basement.

Though my father did not live to see it, he truly believed that by uniting the community, and working together to fund research, we could find a cure for ALS. Today, his legacy is alive in the ALS Therapy Development Institute and their relentless work to end ALS.”

— Alex Heywood, son of Stephen Heywood, ALS TDI co-founder

Fueled by Our Community

We are the Drug Discovery Engine for ALS. The ALS Therapy Development Institute (ALS TDI) is the largest drug discovery institute in the world focused solely on finding treatments for ALS.

As a 501(c)3 nonprofit biotech, we answer only to the ALS community. ALS TDI is funded by people with ALS and their friends and families – because they believe that our scientists will discover the treatments needed to end it.

We are united in one shared mission – to ensure that everyone with ALS has access to effective treatments.

Tony did a lot of research, when he was able to, about who to donate to and who to partner with, and he felt strongly that because of Jamie Heywood and his situation with his brother, they were also as motivated as he was.”

— Walter Tucker, brother of Tony Tucker who lived with ALS for 18 years

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Donations Fuel Our Work

87 cents of each dollar donated goes toward finding treatments at ALS TDI.

Charity Navigator and Candid have awarded ALS TDI their highest ratings.

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Dedication Powers Our Team

From our staff to our board of directors, ALS TDI is led by a driven community of scientists, fundraisers, supporters, and people with ALS who share an unwavering commitment to ending ALS.

Meet our team

ALS TDI is Open to You

Take a look inside the ALS TDI labs to learn why ALS TDI is the Drug Discovery Engine for ALS and see how our science teams are working to invent and discover new ALS treatments.

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Milestones Over the Years

2004

Express Yourself - Gene Expression Core

The Gene Expression Core is launched at ALS TDF after the purchase of a Taqman, a high-end device capable of measuring gene expressions and aiding in the search for disease biomarkers.

ALS TDF moves to a new location, a 16,000 square foot lab and office space in the Cambridge biotech hub, Kendall Square.

Scientists at ALS TDF innovate a novel device known as an intrathecal catheter, which delivers potential therapeutics directly to the spinal cord of the mouse.

ALS TDF hires industry trained drug discovery experts, establishing a dedicated Discovery Biology Core.
2003

Advanced Efficacy Screening

The lab tests 58 potential treatments, including advanced efficacy screenings of 8 drugs.

ALS TDF executes a combination drug trial of Ritonavir and Hydroxyurea at the University of San Francisco in partnership with the Larry L. Hillblom Foundation.

The ALS Hope/Hobler Foundation grants ALS TDF another $500,000, becoming the second foundation to provide $1 million in funding to ALS TDF.

Ronya Kozmetsky makes a $1 million pledge to ALS TDF after the passing of her husband, George.
2002

On the Move

ALS TDF moves across the Charles River into a larger research facility located in the Harvard Partners building.

ALS TDF establishes four external research collaborations with academics and more than 25 partnerships with biotechs and pharmaceutical companies.

The lab tests 28 potential treatments in the SOD1 mouse model.

An anonymous donor provides a $300,000 grant funding the development of a new bioinformatics systems at ALS TDF.

Alex and Brit d'Arbeloff make a $1,000,000 donation to ALS TDF.
2001

First Lab Opened

ALS TDF opens its first lab inside the New England Medical Center. New funding allows the lab to move to a larger space at the Massachusetts College of Pharmacy by the end of the year.

ALS TDF's Founder and Chief Executive Officer, James Allen Heywood, begins to hold "ALS 101" sessions for people with ALS with the goal of providing information and encouraging discussion about drug development.

The lab tests 27 potential treatments in the SOD1 mouse model.

ALS TDF receives approval to conduct the world's first stem cell trial for ALS. Stephen Heywood and two other people with ALS participate.

The ALS Hope/Hobler Foundation makes a $500,000 gift to ALS TDF. ALS TDF renames its main drug-screening program the "ALS Hope Drug Discovery Center."
2000

Largest In-Vivo Screening Program

ALS TDF establishes the world's largest in-vivo screening program, using mouse models to evaluate compound formulation and dosage.

ALS TDF applies for a Phase 1 Stem Cell Transplant trial. If approved, it would be the first of its kind for ALS in the world.

ALS TDF develops Neurobase to track drug leads and gather information to support research and development.

The Heywood brothers and ALS TDF are featured in New Yorker magazine exposé, Curing the Incurable.
1999

Doors are Open

James Allen Heywood starts the ALS Therapy Development Foundation three months after his brother Stephen Heywood is diagnosed with ALS. As a nonprofit biotech, ALS TDF dedicates itself to drug development for patients today.

Stephen Heywood becomes ALS TDF's first donor, writing a check for $10,000 and telling his brother to "get going."

Alex and Brit d'Arbeloff make a $100,000 donation, getting ALS TDF off the ground.

The lab's first therapy concept is developed: replace EAAT2 protein using gene therapy.
2024

Empowering Clinical Trial Participation

In February 2024, ALS TDI launched the ALS Trial Navigator, a groundbreaking platform designed to help people with ALS find the clinical trials that they qualify for and make informed decision about participation.

In April 2024, the Institute recognized the 25th anniversary of ALS TDI's founding, reflecting on 25 years of progress, and celebrating our continued commitment to ending ALS.
2023

Global Collaboration

In March 2023, ALS TDI officially launched the ALS Research Collaborative (ARC) – an ambitious global initiative developed to better understand the underlying biology of the disease, and significantly accelerate the discovery of ALS treatments.

ARC collects natural history data from people with ALS and layers this with additional data that measures their underlying biological processes through omics. This extensive collection of data – that patient participants continue to add to – is made accessible to researchers worldwide through the ARC Data Commons, an innovative data-sharing platform powered by Google Cloud and Google's Looker application.
2022

Working to End ALS

In May 2022, Eledon Pharmaceuticals announced that tegoprubart – a drug invented at ALS TDI – completed phase 2 trials. The drug was demonstrated to be safe and well-tolerated in people with ALS and hit its target pathways in humans.

Google and ALS TDI announce a preprint publication of a paper describing their research to create artificial intelligence tools for scoring ALS-related symptom severity.
2021

Moving to Watertown

With the science programs having grown immensely, ALS TDI moves to up and coming biotech hub, Watertown, MA. This new space allowed ALS TDI to tailor a lab around, what is today, the most comprehensive research program in ALS.

ALS TDI publishes paper on Roles of Arginine Methylation in C9orf72-Mediated ALS and FTD.

ALS TDI begins collaboration with Duke ALS clinic to study ALS reversals.

Fernando G. Vieira, M.D. appointed as Chief Executive Officer
2020

An Unprecedented Year

ALS TDI and supporters continue to push research forward during the COVID-19 pandemic.

ALS TDI discovers a promising new drug target for C9orf72 ALS.
2019

Always Pushing Forward

ALS TDI enhances its longitudinal blood-based biomarker discovery program to identify biomarkers of disease progression.

ALS TDI publishes a paper showing evidence of the neuroprotective role of SOD1 protein aggregates and the toxic role of soluble misfolded proteins in the SOD1 mouse model.

Augie's Quest donates the over $4.5 million raised for them through Orangetheory's #AQuestforMoreLife campaign to ALS Research at ALS TDI.
2018

First of Our Kind

ALS TDI becomes the first nonprofit biotech in any disease to discover and develop a potential treatment, tegoprubart, bringing it from our labs, through FDA review, and into clinical trial.

ALS TDI partners with Google to leverage their expertise in artificial intelligence to analyze the “big data” collected from our Precision Medicine Program, making significant strides towards the development of unbiased, quantitative, and sensitive measures of ALS disease progression.

In collaboration with Neurimmune, ALS TDI publishes a paper supporting the further development of α-miSOD1 antibody as a candidate treatment for forms of ALS involving misfolding of SOD1.

In collaboration with Virginia Tech, ALS TDI publishes a paper on findings demonstrating that sensory neurons are directly affected by two ALS-inducing factors, suggesting important roles for this neuronal subpopulation in ALS-related pathogenesis.

Dr. Fernando Vieira becomes Chief Scientific Officer at ALS TDI in August 2018.
2017

Heating Up ALS Research

ALS TDI co-hosts the 2017 International ALS Symposium with the ALS Hope Foundation in December 2017 in Boston.

ALS TDI publishes a paper validating the efficacy of Copper ATSM (CuATSM) at slowing down ALS disease progression in the SOD1 mouse model.

The #ALSPepperChallenge is started by the Haberstroh Family in honor of Patty Haberstroh.
2016

Uniting for the Fight

ALS TDI enters into a new research partnership with Massachusetts General Hospital/Harvard Medical School and the University of Massachusetts Medical School as part of “ALS ONE”, with the goal of identifying a treatment for ALS by 2020.

ALS TDI announces a new research collaboration with Denali Therapeutics to investigate potential new endpoints for use in ALS clinical trials. ALS TDI and Denali will evaluate and analyze data sets collected through ALS TDI's first-of-its kind Precision Medicine Program.

By July 2016, 300 people are enrolled in the Precision Medicine Program, 5326 accelerometer datasets and 472 DNA fingerprints are captured, 268 fibroblast lines are created, 12 iPSc lines are created, and 248 genomes are sequenced. Findings from the first enrollment cohort signal the opportunity to identify potential new clinical trial endpoints. The Institutional Review Board (IRB), responsible for the Precision Medicine Program, approve the expansion of enrollment to an additional 450 people with ALS.
2015

Leading By Example

Via its wholly-owned subsidiary Anelixis Therapeutics, ALS TDI directs $1.5 million of funds raised from the Ice Bucket Challenge towards the development of a potential treatment for ALS that targets the innate immune system.

Anelixis Therapeutics contracts Lonza, a leading global biologics Active Pharmaceutical Ingredient (API) manufacturer, to develop and manufacture clinical material of anti-CD40L for future Phase I patient trials.

By the end of 2015, the Precision Medicine Program enrolls 230 people, captures 2200 accelerometer datasets and 200 DNA fingerprints, creates 220 fibroblast lines, and sequences 140 genomes.

ALS TDI publishes a paper detailing a new video protocol developed by in-house scientists to evaluate disease progression in the SOD1-G93A Mouse Model of ALS.

ALS TDI publishes a paper highlighting the challenges of pharmacological interventions of cellular stress responses in animals with ALS.

The ClubCorp Charity Classic raises over $800,000 for ALS research through its philanthropic events program.

YFALS Ambassador Sarah Coglianese launches the #WhatWouldYouGive campaign and goes on to raise over $600,000.

PepsiCo and Albertsons Companies donate $100,000 as part of the #ReasonstoCare campaign.
2014

Ice Buckets Make Waves

The Ice Bucket Challenge, created and promoted by ALS TDI supporters Pete Frates, Pat Quinn, and Anthony Carbajal, goes viral and raises $4 million for ALS TDI.

ALS TDI announces that $3 million of Ice Bucket Challenge funding will be spent on clinical stage programs targeting CD40L (via Anelixis Therapeutics) and misfolded SOD1 (via Neurimmune).

The Precision Medicine Program enrolls its first 20 people with ALS and increases enrollment to 300, thanks to funds raised in the Ice Bucket Challenge.

ALS TDI publishes a paper examining the emerging disease phenotype of a transgenic mouse model that overexpresses a mutant human TDP-43 (hTDP-43) gene under mouse prion promoter control.

ALS TDI publishes a paper revealing that dexpramipexole is ineffective in two models of ALS-related neurodegeneration.

Augie's Quest joins forces with ALS TDI, bringing new leadership, experience, and funding to the cause.
2013

The Telemedicine Era Begins

ALS TDI enters into collaborations with three biotech companies on several different potential treatments for ALS: to-BBB (Netherlands), Anido Pharma (USA), and Neurimmune SA (Switzerland).

The Food and Drug Administration (FDA) approves the Phase 2A clinical trial of TDI-132 in ALS patients and enrollment begins in four states (Massachusetts, Georgia, California, and Texas).

ALS TDI launches the first ALS-focused Precision Medicine Program, partnering with people with ALS to share and gather data on medical and family histories, genetics, biomarkers, and patient cell biology in order to better understand ALS.

ALS TDI creates Anelixis Therapeutics as a subsidiary to help advance potential treatments for ALS by pursuing partnerships with private investors.
2012

Moving On Up

ALS TDI moves to a larger, more modern facility in Cambridge's Kendall Square. The 26,000 square foot lab space allows ALS TDI to hire more scientists, take on larger projects, and accelerate drug development.

ALS TDI enters into drug development collaborations with Regenesance (Netherlands) Neurotune (Switzerland) and a technology development collaboration with the Gladstone Institutes (USA).

ALS TDI announces its intent to fund and conduct a clinical research program on TDI-132.
2011

Pursuing Clinical Trials

A historic collaboration unites the Alzheimer's, frontotemporal dementia, and ALS communities in an effort to characterize the first publicly available TDP43 mouse model at ALS TDI.

After preclinical research shows TDI-132 (fingolimod) to be a potential treatment, ALS TDI announces its intent to pursue a clinical trial.

ALS TDI enters into a research agreement with Biogen Idec and UCB Pharma to investigate TDI-846 (aCD40L) as a potential treatment for ALS.
2010

Gene Titan Joins the Lab

ALS TDI and Aestus Therapeutics initiate a collaboration on potential treatments for ALS.

A brand new GeneTitan, named “Corey” after YFALS Ambassador Corey Reich, is installed in the genomics center at ALS TDI.

ALS TDI publishes a paper in Nature Genetics regarding the discovery of potential therapeutic ALS TDI 00846.

Augie's Quest, then associated with the Muscular Dystrophy Association, provides more than $2.5 million in support to ALS TDI.

The US Department of Defense awards a $1.6 million grant to ALS TDI to study and develop potential treatments for ALS.
2009

Coining our Call to Action

ALS TDI collaborates with Asklepios on the development of novel adeno-associated viral vectors to be used in drug development research.

Applied Proteomics becomes a strategic partner in ALS TDI's effort to characterize protein expression changes associated with disease onset and progression.

Sean Scott, president of ALS TDI, passes away from ALS on February 6th, 2009. His picture is placed in the lab and work continues on in his memory.

ALS TDI publishes a paper on study results which show no potential benefits of chronic lithium dosing in G93A-SOD1 mouse model of ALS.

Board Member Stanley Appel, M.D., coins the phrase "ALS is not an incurable disease, it is an underfunded one" in a congressional hearing regarding ALS therapeutic development.

Steve Perrin, Ph.D., is named Chief Executive Officer of ALS TDI, building on his significant progress made as chief scientific officer.
2008

Tri-State Trek Hits $1 Million

ALS TDI partners with the Allen Institute for Brain Science and begins a massive in situ hybridization experiment.

ALS TDI partners with 6 clinics to collect blood and tissue samples from ALS patients for cross-referencing against gene expression pathways identified in the SOD1 database.

ALS TDI collaborates with California Stem Cell. Work suggest that stem cells can engraft and survive in spinal cord of SOD1 mice. Groups extend collaboration work to develop cell-based drug delivery tools to treat ALS.

ALS TDI's science team grows to include more than 30 full-time professional researchers.

ALS TDI publishes a paper detailing guidelines for researchers using the G93A-SOD1 mouse model of ALS. Based on this work, Prize4Life awards a $1 million biomarker and therapeutic prize to ALS TDI.

ALS TDI's signature event, the 270-mile Tri-State Trek, surpasses $1 million in total fundraising.

US Department of Defense makes a $1.1 million grant to ALS TDI for ALS research.

RGK Foundation makes $1 million, two-year grant to ALS TDI.

Friends for Faye Fund, one of the first family funds started at ALS TDI, reaches $1 million in total fundraising.
2007

From Foundation to Institute

The ALS Therapy Development Foundation (ALS TDF) is renamed the ALS Therapy Development Institute (ALS TDI).

ALS TDI becomes one of the best funded private research organizations in the world to be focused on a single disease.

ALS TDI completes the first ever comprehensive gene expression database of the SOD1 mouse in partnership with Gene Logic.

ALS TDI purchases a Laser Capture Microdisection (LCM) to investigate cell-specific changes in gene and protein expression.

ALS TDI launches a novel gene therapy pipeline and partners with Microbix to develop targeted vectors.

"Yoda" and "Darth", two BioMek automation robots, become permanent members of the team at ALS TDI and are tasked with speeding up the processing of RNA and genotyping.

After eight years leading ALS TDI, James Heywood steps down as Chief Executive Officer and joins the board.

Steve Perrin, Ph.D., becomes the organization's first Chief Scientific Officer.

The Steve Milne Family Fund reaches its $1 million fundraising goal for ALS TDI.
2006

Committed to the Cure

The In Vitro Validation Team is organized at ALS TDF. Their primary charge is to validate the activity of small molecule, protein biologics, and gene therapy products prior to advancing them into full in-vivo (animal) testing for efficacy.

So Much So Fast, a critically-acclaimed documentary about the Heywood family and ALS TDF, premiers at the Sundance Film Festival.

After eight years living with ALS, Stephen Heywood passes away on November 26th, 2006. He remains the inspiration and motivating force behind ALS TDF to this day.

Sean Scott is named President of ALS TDF.

Augie Nieto becomes Chairman of the Board at ALS TDF. Augie, a fitness mogul diagnosed with ALS in 2005, commits to raising $18 million in three years for ALS research at ALS TDF.
2005

Leveling Up in the Lab

ALS TDF becomes the largest nonprofit research and development (R&D) program exclusively focused on ALS.

A Biosafety Level 2 Lab is constructed at ALS TDF allowing for further expansion of gene therapy and cell-based treatment pipelines.

ALS TDF purchases a powerful Zeiess X1 microscope and builds up its molecular imaging capabilities, with funding from the Jeff Hadley Fund.

The Mass Spectrometry Core created to monitor drug levels attained in any tissue type.

The Passion for Life Fund, inspired by a person with ALS, Mary Lou Krauseneck, reaches its $1 million fundraising milestone.
2004

Express Yourself - Gene Expression Core

The Gene Expression Core is launched at ALS TDF after the purchase of a Taqman, a high-end device capable of measuring gene expressions and aiding in the search for disease biomarkers.

ALS TDF moves to a new location, a 16,000 square foot lab and office space in the Cambridge biotech hub, Kendall Square.

Scientists at ALS TDF innovate a novel device known as an intrathecal catheter, which delivers potential therapeutics directly to the spinal cord of the mouse.

ALS TDF hires industry trained drug discovery experts, establishing a dedicated Discovery Biology Core.
2003

Advanced Efficacy Screening

The lab tests 58 potential treatments, including advanced efficacy screenings of 8 drugs.

ALS TDF executes a combination drug trial of Ritonavir and Hydroxyurea at the University of San Francisco in partnership with the Larry L. Hillblom Foundation.

The ALS Hope/Hobler Foundation grants ALS TDF another $500,000, becoming the second foundation to provide $1 million in funding to ALS TDF.

Ronya Kozmetsky makes a $1 million pledge to ALS TDF after the passing of her husband, George.
2002

On the Move

ALS TDF moves across the Charles River into a larger research facility located in the Harvard Partners building.

ALS TDF establishes four external research collaborations with academics and more than 25 partnerships with biotechs and pharmaceutical companies.

The lab tests 28 potential treatments in the SOD1 mouse model.

An anonymous donor provides a $300,000 grant funding the development of a new bioinformatics systems at ALS TDF.

Alex and Brit d'Arbeloff make a $1,000,000 donation to ALS TDF.
2001

First Lab Opened

ALS TDF opens its first lab inside the New England Medical Center. New funding allows the lab to move to a larger space at the Massachusetts College of Pharmacy by the end of the year.

ALS TDF's Founder and Chief Executive Officer, James Allen Heywood, begins to hold "ALS 101" sessions for people with ALS with the goal of providing information and encouraging discussion about drug development.

The lab tests 27 potential treatments in the SOD1 mouse model.

ALS TDF receives approval to conduct the world's first stem cell trial for ALS. Stephen Heywood and two other people with ALS participate.

The ALS Hope/Hobler Foundation makes a $500,000 gift to ALS TDF. ALS TDF renames its main drug-screening program the "ALS Hope Drug Discovery Center."
2000

Largest In-Vivo Screening Program

ALS TDF establishes the world's largest in-vivo screening program, using mouse models to evaluate compound formulation and dosage.

ALS TDF applies for a Phase 1 Stem Cell Transplant trial. If approved, it would be the first of its kind for ALS in the world.

ALS TDF develops Neurobase to track drug leads and gather information to support research and development.

The Heywood brothers and ALS TDF are featured in New Yorker magazine exposé, Curing the Incurable.
1999

Doors are Open

James Allen Heywood starts the ALS Therapy Development Foundation three months after his brother Stephen Heywood is diagnosed with ALS. As a nonprofit biotech, ALS TDF dedicates itself to drug development for patients today.

Stephen Heywood becomes ALS TDF's first donor, writing a check for $10,000 and telling his brother to "get going."

Alex and Brit d'Arbeloff make a $100,000 donation, getting ALS TDF off the ground.

The lab's first therapy concept is developed: replace EAAT2 protein using gene therapy.
2024

Empowering Clinical Trial Participation

In February 2024, ALS TDI launched the ALS Trial Navigator, a groundbreaking platform designed to help people with ALS find the clinical trials that they qualify for and make informed decision about participation.

In April 2024, the Institute recognized the 25th anniversary of ALS TDI's founding, reflecting on 25 years of progress, and celebrating our continued commitment to ending ALS.
2023

Global Collaboration

In March 2023, ALS TDI officially launched the ALS Research Collaborative (ARC) – an ambitious global initiative developed to better understand the underlying biology of the disease, and significantly accelerate the discovery of ALS treatments.

ARC collects natural history data from people with ALS and layers this with additional data that measures their underlying biological processes through omics. This extensive collection of data – that patient participants continue to add to – is made accessible to researchers worldwide through the ARC Data Commons, an innovative data-sharing platform powered by Google Cloud and Google's Looker application.
2022

Working to End ALS

In May 2022, Eledon Pharmaceuticals announced that tegoprubart – a drug invented at ALS TDI – completed phase 2 trials. The drug was demonstrated to be safe and well-tolerated in people with ALS and hit its target pathways in humans.

Google and ALS TDI announce a preprint publication of a paper describing their research to create artificial intelligence tools for scoring ALS-related symptom severity.
2021

Moving to Watertown

With the science programs having grown immensely, ALS TDI moves to up and coming biotech hub, Watertown, MA. This new space allowed ALS TDI to tailor a lab around, what is today, the most comprehensive research program in ALS.

ALS TDI publishes paper on Roles of Arginine Methylation in C9orf72-Mediated ALS and FTD.

ALS TDI begins collaboration with Duke ALS clinic to study ALS reversals.

Fernando G. Vieira, M.D. appointed as Chief Executive Officer
2020

An Unprecedented Year

ALS TDI and supporters continue to push research forward during the COVID-19 pandemic.

ALS TDI discovers a promising new drug target for C9orf72 ALS.
2019

Always Pushing Forward

ALS TDI enhances its longitudinal blood-based biomarker discovery program to identify biomarkers of disease progression.

ALS TDI publishes a paper showing evidence of the neuroprotective role of SOD1 protein aggregates and the toxic role of soluble misfolded proteins in the SOD1 mouse model.

Augie's Quest donates the over $4.5 million raised for them through Orangetheory's #AQuestforMoreLife campaign to ALS Research at ALS TDI.