PLATINUM2022

ChadTough Defeat DIPG Foundation

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

Mission

The mission of the ChadTough Defeat DIPG Foundation is to inspire and fund game-changing research to discover effective treatments for pediatric brain cancer, with an emphasis on diffuse intrinsic pontine glioma (DIPG).

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 30 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.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The mission of the ChadTough Defeat DIPG Foundation is to inspire and fund game-changing research to discover effective treatments for pediatric brain cancer, with an emphasis on diffuse intrinsic pontine glioma (DIPG).

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

The ChadTough Defeat DIPG Foundation has awarded over $20 million to fund DIPG-specific research projects since 2016. We are committed to building the most comprehensive grant program for funding DIPG research. To achieve this goal, we offer three types of grants: CureMaker, New Investigator, and Fellowships (pre and post doctoral).

In 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.

Population(s) Served
Children and youth
Health

Where we work

Videos

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

The Foundation raises money to inspire and fund game-changing research to discover effective treatments for pediatric brain cancer, with an emphasis on diffuse intrinsic pontine glioma (DIPG).

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

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 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.

In June of 2022, ChadTough Defeat DIPG Foundation announced the funding of eight new diffuse intrinsic pontine glioma (DIPG) research projects totaling nearly $4 million over the next three years. The ChadTough Defeat DIPG grant program has now committed over $20 million to 48 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).

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.

  • Who are the people you serve with your mission?

    In addition to funding research, part of our program supports families in the fight with navigation support from experienced nurses. Our nurses help families become educated on the disease and options, connect to trials and second opinions, and support them throughout their journey.

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

    Electronic surveys (by email, tablet, etc.),

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

    To identify and remedy poor client service experiences, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Families in need register through our website for our program. Our nurses respond via email. Because these families are facing a terminal diagnosis, we do not ever want to be 'pushy' in our approach. So if we didn't hear back from the family, we would email one more time. After that, we assumed they no longer wanted the service. Through our survey, we identified that for a very small group, the nurses emails were going into junk folders. A family was very upset that she never heard from us. Turns out, she had multiple emails in her junk box. We have since changed our process. First approach is email. If we do not hear from the family within 24 hours, we follow up with a phone call.

  • 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?

    Many have asked for an opportunity to provide feedback, primarily because of their gratefulness for the help they received from their nurse. Giving them the opportunity to provide feedback and help the program strengthen has given these families, who are in a terrible place in their lives, a positive outlet to make them feel like they are helping, too.

  • 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 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,

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

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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

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 11/19/2022
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

Chrislan Fuller Manuel

Community Philanthropist

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

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 11/19/2022
info Candid has made improvements to the race and ethnicity options.

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 (cisgender)
Sexual orientation
Heterosexual or straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability

Equity strategies

Last updated: 07/09/2022

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 ask team members to identify racial disparities in their programs and / or portfolios.
  • 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 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.