PLATINUM2024

ChadTough Defeat DIPG Foundation

aka The ChadTough Foundation   |   Saline, MI   |  www.chadtough.org

Mission

In the fight for a DIPG/DMG cure, we help patients and families by funding game-changing research and providing navigation throughout their journey.

Notes from the nonprofit

The days of DIPG being considered too rare and too difficult to find a cure are over. Just like the trajectory of leukemia, doctors now believe a cure will be found in our lifetime. ChadTough Defeat DIPG will not stop until that cure is found! With almost half of all pediatric brain cancer deaths due to DIPG, we know that finding a cure will not only save a significant percentage of the kids dying from cancer, but will also unlock effective treatments for other types, as well. The Carrs and Mosiers uniting their two foundations into one provides even more efficiency in their efforts to direct as much funding to research as possible. Now joined by over 40 Family Partners, and growing, this movement called #ChadTough is more powerful than ever. And our work will not end until DIPG is no longer a death sentence and we truly #DefeatDIPG!

Ruling year info

2015

CEO

Ann Friedholm

Main address

P.O. Box 907

Saline, MI 48176 USA

Show more contact info

Formerly known as

The ChadTough Foundation

The ChadTough Foundation

The ChadTough Foundation

The ChadTough Foundation

The ChadTough Foundation

The ChadTough Foundation

EIN

47-4041494

NTEE code info

Human Service Organizations (P20)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2022, 2021 and 2020.
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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

DIPG/DMG are particularly aggressive and difficult-to-treat brain tumors, typically found in children, and almost always fatal. 90% of kids diagnosed with DIPG die within 2 years. The overall the survival rate is less than 1%. DIPG typically affects kids between the ages of 4 and 11, however it can also affect younger and older children, including young adults. In recent years, researchers’ understanding of the biology of these tumors has significantly improved. Researchers now believe a cure for DIPG is within reach. In the fight for a DIPG/DMG cure, we help patients and families by funding game-changing research and providing navigation throughout their journey. We see a world where kids diagnosed with DIPG/DMG can have bright futures and can live out their dreams.

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?

DIPG Research Grants & Patient Navigation

ChadTough Defeat DIPG Foundation has funded over 58 researchers, at 31 institutions worldwide, totaling $23 million. We are committed to building the most comprehensive grant program for funding DIPG/DMG research. To achieve this goal, we offer three types of grants: Game Changer, New Investigator, and Fellowships (pre and post doctoral).

In May 2021, we launched My DIPG Navigator, a free service that offers one-on-one support from an experienced nurse for families navigating a DIPG or DMG diagnosis. Over 150 families have been served by this program since its inception.

Population(s) Served
Children and youth
Health

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 dollars received in contributions

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

Children and youth

Related Program

DIPG Research Grants & Patient Navigation

Type of Metric

Other - describing something else

Direction of Success

Increasing

Context Notes

Line 8- part I on 990

Total dollar amount of grants awarded

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

Terminally ill people, Children, Adolescents, Preteens

Related Program

DIPG Research Grants & Patient Navigation

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Grants paid to research institutions

Number of families served

This metric is no longer tracked.
Totals By Year
Related Program

DIPG Research Grants & Patient Navigation

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Total number of families served over the course of the program

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.

Transform the outlook for children diagnosed with pediatric brain cancer by focusing on research for the most lethal form, DIPG/DMG.
Ensure every family facing a DIPG/DMG diagnosis has equal access to the most promising treatments and knowledge as they navigate the disease.

The key strategies our foundation is focused on to achieve our goal are:
1. Raise Funds
2. Provide grants to the most promising, incremental research on DIPG anywhere in the world
3. Drive disease awareness amongst the general population
4. Establish national leadership presence to foundation within DIPG/DMG researcher, family and supporter community
4. Establish an effective and efficient organization to drive long-term growth

Our organization's key capabilities for meeting our goals are:

Fundraising: Working collaboratively with other families affected by pediatric brain cancer, we inspire others to give toward our mission through expertise in development, event planning, and marketing.

Grant-making: Funds are distributed primarily through a formal grant program guided by our ChadTough Defeat DIPG Scientific Advisory Council, which is comprised of leading experts on DIPG from around the world. The Council reviews grant applications and makes recommendations to ensure that the ChadTough Defeat DIPG Foundation uses its resources to fund the most promising DIPG research projects. We are committed to building the most comprehensive grant program for funding DIPG research. To achieve this goal, we are now offering three types of grants: Fellowships, New Investigator Grants, and Game Changer Grants.

Navigator Program: Experienced nurses are here to personally help families make informed decisions and do what is best for their loved ones. Designed by families who have faced a DIPG/DMG diagnosis, this is the unique FREE resource they wish had existed during their own fight. Our nurses will connect families to the proper resources to make the most informed decisions throughout their entire DIPG/DMG journey.

In December 2022, ChadTough Defeat DIPG Foundation announced the funding of eight new diffuse intrinsic pontine glioma (DIPG) fellowship totaling nearly $2 million over the next three years. The ChadTough Defeat DIPG grant program has now committed over $23 million to 58 researchers across 31 institutions worldwide.

In addition to the research grants, ChadTough Defeat DIPG Foundation, together with its Family Partners and Partner Organizations, has launched a new nationwide program, My DIPG Navigator, designed to give much-needed, free, individualized guidance for patients and their families facing a pediatric brain cancer diagnosis, specifically DIPG (diffuse intrinsic pontine glioma) or DMG (diffuse midline glioma). More than 150 families have been served by this program.

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 shared information about our current feedback practices.
  • 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

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

    We collect feedback from the people we serve at least annually, 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 share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

ChadTough Defeat DIPG Foundation
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Operations

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

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Connect with nonprofit leaders

Subscribe

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.

ChadTough Defeat DIPG Foundation

Board of directors
as of 01/19/2024
SOURCE: Self-reported by organization
Board chair

Tammi Carr

Chairman of the Board Co-Founder, ChadTough Defeat DIPG Foundation & Executive Director, Jones Family Foundation

Term: 2015 -

Michael Ben

Partner, Honigman, LLP Co-Leader, Securities and Corporate Governance Practice Group

Jason Carr

Co-Founder, ChadTough Defeat DIPG Foundation

Ann Friedholm

CEO, ChadTough Defeat DIPG Foundation

Randy Glick

CEO and Chairman of the Board, Alro Steel

Sarah Harbaugh

Community Philanthropist

Ed Magnus

Co-Founder, BlueSpruce Investments

Jenny Mosier

Co-Founder, ChadTough Defeat DIPG Foundation

Mark Mosier

Partner, Covington & Burling LLP Co-Founder and Director of Research, ChadTough Defeat DIPG Foundation

Lloyd Carr

Board Member Emeritus

Marshall Urist

Executive VP, Royalty Pharma

Leela Hamp

Licensed Dermatoligist, Ganger Dermatology

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 1/19/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 10/24/2023

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 ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • 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 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.