Augies Quest To Cure ALS Inc

ALS is curable. It's simply underfunded.

Denver, CO   |  https://augiesquest.org

Mission

Augie’s Quest to Cure ALS is dedicated to changing the experience of people living with ALS. We raise the funds and awareness urgently needed to advance cutting-edge research, fast-track effective treatments, and ultimately, find a cure for this devastating disease. We believe ALS is curable; it’s just underfunded. Join us to make Augie’s Quest your Quest and #endALS.

Ruling year info

2018

Chairman of the Board

Augustine Nieto

Main address

PO Box 9886

Denver, CO 80209 USA

Show more contact info

EIN

83-0934624

NTEE code info

Fund Raising and/or Fund Distribution (H12)

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 is no effective cure for Amyotrophic Lateral Sclerosis. We work to fill the funding gap to fund the best science to fund treatments and eventually a cure for ALS. Augie’s Quest to Cure ALS is dedicated to changing the experience of people living with ALS. We raise the funds and awareness urgently needed to advance cutting-edge research, fast-track effective treatments, and ultimately, find a cure for this devastating disease.

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?

Augie's Quest Translational Research Center at ALS TDI

In January 2020, the ALS Therapy Development Institute announced the Augie’s Quest Translational Research Center at ALS TDI. This Research Center honors the work, innovation and steadfast support of Augie’s Quest and its many generous and committed donors to finding a cure for ALS. Housed within ALS TDI’s Cambridge, Mass., laboratory, the Augie’s Quest Translational Research Center will help to strengthen its existing and future research efforts by aiming to dissect mechanisms of clinical ALS and use the knowledge to develop new, more powerful drug discovery platforms and facilitate more effective drug development in ALS.

Population(s) Served
People with diseases and illnesses
Families

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.

Total dollar amount of grants awarded

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with physical disabilities, Terminally ill people

Related Program

Augie's Quest Translational Research Center at ALS TDI

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

These metrics are in millions. 2021: $3,252,285 2020: $2,700,000 2019: $6,000,000 The pandemic did challenge are largest funding source, the fitness industry.

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.

We know ALS is a disease we can tackle, a problem we can solve. Because ALS is curable; it’s just underfunded. There are many needs in the ALS community, so we are singularly focused on funding translational research.

Our goal is to fund translational research that will most efficiently and effectively result in treatments for ALS. In order to do this, we will fund grants to research organizations. Our grants are milestone driven and require the research institution to spend the money directly on research (versus bricks and mortar, marketing, or overhead).

Augie’s Quest to Cure ALS raises the funds and awareness urgently needed to advance cutting-edge research, fast-track effective treatments, and ultimately, find a cure for ALS. This is done through funding the best research with the highest probability of helping families currently living with the disease.

In order to fund the right research, we must raise the money needed. Our strong Board of Directors, Leadership and Fitness Advisory Council's work with our team to create fundraising platforms that make it easy and impactful for individuals to donate to the Quest. We coordinate best in class fundraising cause campaigns, successful Gala's, and in-club fitness activations to raise money to fuel the cure.

These dollars are granted to credible research organizations that meet designated milestones with peer-review papers.

Augie's Quest to Cure ALS has experience raising the funds necessary to fund the best ALS research. Prior to becoming our own 501c3 in 2018, we'd raised almost $150 million for ALS research. Our leadership is experienced in this, and the numbers show the efficiency and ability to make it happen.

The Augie’s Quest Translational Research Center at ALS TDI honors the work, innovation and steadfast support of Augie’s Quest and its many generous and committed donors to finding a cure for ALS. Housed within ALS TDI’s Cambridge, Mass., laboratory, the Augie’s Quest Translational Research Center will help to strengthen its existing and future research efforts by aiming to dissect mechanisms of clinical ALS and use the knowledge to develop new, more powerful drug discovery platforms and facilitate more effective drug development in ALS.

• December 2021: Augie’s Quest to Cure ALS announced a $5.8 million commitment to fund the discovery of new candidate drugs to slow, stop, or even reverse ALS disease progression at the Augie’s Quest Translational Research Center through 2024. These funds will cover science staff compensation, yearly equipment costs, and additional needs at the Augie’s Quest Translational Research Center, a key component of the ALS TDI Drug Discovery Engine.

“I couldn’t be prouder, or more hopeful, about the research funded by Augie’s Quest to Cure ALS this year,” wrote Augie Nieto, Co-Founder and Chairman of the Board of Augie’s Quest to Cure ALS. “We see a future without ALS, and are doing everything possible to make that a reality in my lifetime.”

• August 2021: Augie’s Quest to Cure ALS provided $125,000 to the ALS Therapy Development Institute in honor of Phil Green so scientists at the Augie’s Quest Translational Research Center can develop the next generation human induced pluripotent stem cell models to discover key biological features that distinguish subtypes of ALS with the goal of making each of those subtypes treatable.

o January 2020: the ALS Therapy Development Institute announced the creating of the Augie’s Quest Translational Research Center at ALS TDI. This Research Center honors the work, innovation and steadfast support of Augie’s Quest and its many generous and committed donors to finding a cure for ALS. Housed within ALS TDI’s laboratory, the Augie’s Quest Translational Research Center will help to strengthen its existing and future research efforts by aiming to dissect mechanisms of clinical ALS and use the knowledge to develop new, more powerful drug discovery platforms and facilitate more effective drug development in ALS.

2. Discovery Biology Suite at ALS TDI dedicated in honor of Elizabeth Scott Bodine - changing outcomes for people living with ALS

• December 2021 $1.5 million was granted to ALS TDI in 2021 for the discovery of new drug targets, or intervention points, for the effective treatment of ALS. The discovery of a new drug target for ALS is akin to opening an entirely new avenue for slowing, stopping, or reversing a disease that has, up to now, been largely untreatable. Target discovery is the creative science that is foundational to breakthroughs in drug discovery and development and changing outcomes for people diagnosed with ALS in the future.

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?

    People living with ALS, their caregivers and loved ones.

  • 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),

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

    To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    Augie's Quest to Cure ALS is focused on funding the best translational research for ALS. This is our primary focus, but we've learned we can do small things that make a huge difference. We listen to those we serve, and engage in ways to support them. For example, there was an expressed need for help with communication devices, and also for direct help from someone with experience in caring for individuals with ALS. Augie's Quest has a donor that provided iPads loaded with technology software to gift to individuals that have bulbar onset, but can still use their hands to communicate. In addition, we have an ALS experienced Registered Nurse who Augie's Quest pays to have virtual calls to help with direct needs and supporting caregivers in caring for their loved ones with ALS.

  • With whom is the organization sharing feedback?

    Our staff, Our board, Our funders,

  • How has asking for feedback from the people you serve changed your relationship?

    When people with ALS share their frustration with the current research trial system, it can help us invest in ALS Research that focuses in research with like minded institutions. The ALS community prefers, for obvious reasons, clinical research trials without a placebo arm. We can fund the best science with similar goals, and the Phase 2 trial by Eledon for AT-1501, a drug largely funded with donations to Augie's Quest to Cure ALS has no placebo. This allows the ALS community to choose trials that will benefit them most.

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

    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 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,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome, Staff find it hard to prioritize feedback collection and review due to lack of time,

Financials

Augies Quest To Cure ALS Inc
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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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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

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Augies Quest To Cure ALS Inc

Board of directors
as of 05/11/2022
SOURCE: Self-reported by organization
Board chair

Mr. Augustine Nieto

Lynne Nieto

Bert Selva

Shea Homes

Paul Sallaberry

Eric Affeldt

Sherri Medina

Samuel Worthington

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? No

Organizational demographics

SOURCE: Self-reported; last updated 5/11/2022

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:

Race & ethnicity
Hispanic/Latino/Latina/Latinx
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 02/01/2022

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 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 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.