ALS Therapy Development Institute

Dedicated to curing ALS.

aka ALS Therapy Development Institute (ALS TDI)   |   Watertown, MA   |  https://www.als.net/

Mission

To invent and discovery drugs until everyone with ALS has effective treatments.

Ruling year info

1999

CEO and Chief Scientific Officer

Fernando G. Vieira M.D.

Main address

480 Arsenal Street Suite 201

Watertown, MA 02472 USA

Show more contact info

EIN

04-3462719

NTEE code info

Specifically Named Diseases Research (H80)

Neurology, Neuroscience (H96)

Research Institutes and/or Public Policy Analysis (E05)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

There are currently no cures or effective treatments for ALS.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

ALS Preclinical Pharmacology Program

The ALS Therapy Development Institute (ALS TDI) and its researchers quickly discover and validate potential treatments for ALS. It is the world’s first and largest nonprofit biotech focused 100 percent on ALS research. Led by drug development experts and people with ALS, ALS TDI understands the urgent need to slow and stop this disease.

Located in the Greater Boston Area, ALS TDI employs more than 30 full-time scientists and researchers with expertise across all areas of drug discovery. ALS TDI is recognized as an international leader in preclinical and translational ALS research, and partners with pharmaceutical companies and biotechs around the world. Awarded the highest nonprofit rating – four stars – on Charity Navigator, ALS TDI spends 87 cents of every dollar raised on finding effective treatments and cures for ALS.

We have screened more potential treatments in our lab than all other ALS research programs combined. We are recognized as an international leader in preclinical and translational ALS research.

Population(s) Served
People with diseases and illnesses

We created the world’s first ALS Precision Medicine Program (PMP), a telehealth initiative, that partners with people with ALS around the world to collect and analyze medical histories, family histories, genetics data, biomarkers, and patient cell biology to better understand the processes that drive and influence ALS.

By listening to people with ALS and collecting unbiased data we will develop a better understanding of how to slow or stop ALS. Through the PMP, we can accomplish our goals of:

-Discovering new targeted treatments for ALS.
-Making clinical trials faster and more efficient.
-Empowering people with ALS by giving them access to their own data.

Only by working in true partnership with people with ALS can we create a comprehensive database and enhance our knowledge of this disease.

Population(s) Served
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Number of grants received

This metric is no longer tracked.
Totals By Year
Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of website sessions

This metric is no longer tracked.
Totals By Year
Type of Metric

Other - describing something else

Direction of Success

Holding steady

Hours of expertise provided

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The ALS Therapy Development Institute (ALS TDI) is the largest drug discovery lab in the world focused solely on finding treatments for ALS.

As a nonprofit biotech we answer only to the ALS community. We are united in one shared mission – to ensure that everyone with ALS has access to effective treatments.

Every day, our scientists are working relentlessly to find new ways to treat this disease, and to ensure that those treatments advance to trial.

At ALS TDI we understand the urgent need to discover and develop potential treatments for ALS. Our comprehensive approach to ALS research spans every aspect of drug discovery, research, and therapeutic development, including:

We learn about ALS from people with ALS – We believe that best way to learn more about this disease is to partner with people with ALS. Through our first-in-kind ALS Precision Medicine Program, we partner with people around the world to collect medical histories, family histories, genetics, biomarkers, and patient cell biology to better understand the processes that drive and influence ALS.

We operate one of the largest preclinical drug validation programs in ALS – There are too few potential treatments in clinical trials for ALS. We need a robust, high quality drug pipeline to ultimately treat every person with ALS. More treatments mean more hope.

We aim to make clinical trial faster and more efficient – Clinical trials for ALS currently require many participants. That slows the studies down and makes them very costly. Using emerging technologies, we hope to make clinical trials more efficient to reveal the most promising treatments faster.

We create and validate many models of ALS to study the disease and rigorously test potential treatments – ALS is extremely complex involving a myriad of biological pathways. To test drugs more rigorously, we use a variety of both cell and animal models to account for all of the complexities of ALS.

ALS TDI also executes 2-4 collaborations with pharma or academia each year to support the advancement and translation of potentially life changing therapeutics into the clinic and, ultimately, the marketplace. In 2018, ALS TDI became the first nonprofit biotech in any disease to invent a potential treatment, AT-1501, and bring it from our own lab, through FDA review and into clinical trial.

At ALS TDI, we believe our most valuable asset is the ALS community. Funded primarily through community grassroots events and initiatives and 16,000 individual donations each year, people with ALS and their families and caregivers are involved at every level and are at the forefront of every decision made. ALS TDI employs a team of 30 experienced drug development experts to advance 15-20 potential therapeutics each year, comprising the basis of our comprehensive and unbiased research strategy; we look everywhere for information and let data drive decision points, leveraging all types of therapeutic programs including small molecules, biologics, gene therapies, and stem cells.

Through our first-in-kind ALS Precision Medicine Program, we partner with people around the world to collect medical histories, family histories, genetics, biomarkers, and patient cell biology to better understand the processes that drive and influence ALS.

ALS TDI strives to bring all important technologies in-house, including gene sequencing, cell-based phenotype discovery, cell-based assay development, and automated drug screening capabilities. In addition, our state-of-the-art animal care facility houses approximately 1,600 animals which allow for drug lead optimization and improved understanding of ALS disease biology. In addition, ALS TDI partners with scientific collaborators to rapidly advance potential treatments into the clinic, as well as strategic funding alliances with foundations and other nonprofits from across the spectrum of neurodegeneration. Successful partnerships include a licensing agreement with Anelixis Therapeutics to develop a drug invented by ALS TDI scientists for ALS treatment and a long term collaboration with Google to develop improved clinical endpoint measures for ALS using machine learning technologies.

We are dedicated to discovering and developing effective treatments to end ALS. We will not stop until there are treatments for every single person living with ALS. Our cutting edge approach has resulted in:
• Being the first nonprofit biotech in any disease to invent a potential treatment, AT-1501, and bring it from our own lab, through FDA review and into clinical trial.
• Creating the world’s first ALS Precision Medicine Program (PMP), a telehealth initiative, that partners with people with ALS around the world to collect and analyze medical histories, family histories, genetics data, biomarkers, and patient cell biology to better understand the processes that drive and influence ALS.
• Setting the worldwide standards in preclinical drug screening in models of ALS.
• Partnering with Google and leveraging their expertise in artificial intelligence to analyze the “big data” collected from our PMP and develop sensitive measures of ALS disease progression in order to increase the pace of ALS clinical research.
• Rigorously testing over 400 drugs in animal models of ALS—more than any other ALS research lab in the world.
• Developing additional animal and cell-based models of ALS to test more potential treatments.
• Establishing a robust cell banking, cell reprogramming, and genome editing capability for iPSC generation and cell-based drug screening, allowing us to identify more promising leads.
• Collaborating with organizations around the world to screen potential treatments at our lab. We have pre-clinically validated several potential treatments for ALS, including: a monoclonal antibody from Neurimmune, a viral vector delivery of an ASO from the Institute of Myology, and a small molecule drug, Copper ATSM, identified at the University of Melbourne.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    We serve those impacted by ALS. This includes people with ALS, family, friends, and loved ones. ALS can impact people of all races, ages, and ethnicities. ALS TDI is located in the USA, but our research to find treatments aims to impact people around the world.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    We have recently hired a Director of Community Outreach and Engagement based on feedback from the community.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    Staff find it hard to prioritize feedback collection and review due to lack of time, It is difficult to identify actionable feedback,

Financials

ALS Therapy Development Institute
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

ALS Therapy Development Institute

Board of directors
as of 05/27/2022
SOURCE: Self-reported by organization
Board co-chair

Mr. Augie Nieto

Life Fitness Inc.

Term: 2007 -


Board co-chair

Dr. Steve Perrin

Eledon Pharmaceuticals

Term: 2010 -

Leslie Michelson

Private Healthcare Management

Augie Nieto

Life Fitness, MDA

Stan Appel

Methodist Neurological Institute

Alexander Cappello

Cappello Group, Inc.

James Heywood

PatientsLikeMe

John Heywood

MIT

Spiros Jamas

Tempero Pharmaceuticals, State Street Bank

Keith Melanson

Credit Suisse, Private Banking USA

Robert Rodin

RDN Group

Theodore Reich

Reich & Walner

Steve Perrin

ALS TDI

Robert Sepucha

Fresenius Medical Care North America

Michael Smith

B.T. Loftus Ranches Inc

Jenny Gore Dwyer

St. George Marine

Andrew Niblock

Greenwich Country Day School

Kent Bransford

Steve Fowler

Lynne Nieto

Augie's Quest

Paul Sallaberry

Julie Swan

A Life Story Foundation

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 3/11/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Gender identity
Male

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 03/22/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.