ChadTough Defeat DIPG Foundation
EIN: 47-4041494
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
2015
CEO
Ann Friedholm
Main address
P.O. Box 907
Saline, MI 48176 USA
Formerly known as
The ChadTough Foundation
The ChadTough Foundation
The ChadTough Foundation
The ChadTough Foundation
The ChadTough Foundation
The ChadTough Foundation
EIN
47-4041494
Nonprofits
Oncology
Pediatrics
Diseases and conditions
Human services
Population served
Children and youth
NTEE code
Human Service Organizations (P20)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Tax forms
Communication
Programs and results
Reports and documents
Download annual reportsWhat we aim to solve
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
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.
Where we work
External reviews
Photos
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Evaluation documents
Download evaluation reportsTotal 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
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Reports and documents
Download strategic planLearn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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.
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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
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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.
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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 tell the people who gave us feedback how we acted on their feedback
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What challenges does the organization face when collecting feedback?
It is difficult to get the people we serve to respond to requests for feedback, It is difficult to get honest feedback from the people we serve
Financials
Financial documents
Download audited financialsRevenue vs. expenses: breakdown
Liquidity in 2021 info
0.91
Months of cash in 2021 info
5.9
Fringe rate in 2021 info
7%
Funding sources info
Assets & liabilities info
ChadTough Defeat DIPG Foundation
Revenue & expensesFiscal Year: Jan 01 - Dec 31
SOURCE: IRS Form 990
ChadTough Defeat DIPG Foundation
Balance sheetFiscal Year: Jan 01 - Dec 31
SOURCE: IRS Form 990
The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.
Fiscal Year: Jan 01 - Dec 31
SOURCE: IRS Form 990
This snapshot of ChadTough Defeat DIPG Foundation’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.
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Business model indicators
| Profitability info | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Unrestricted surplus (deficit) before depreciation | $854,547 | -$136,480 | $1,144,280 | $1,473,467 | $2,921,773 |
| As % of expenses | 56.2% | -5.1% | 63.5% | 77.3% | 55.2% |
| Unrestricted surplus (deficit) after depreciation | $854,547 | -$136,480 | $1,144,280 | $1,473,467 | $2,921,773 |
| As % of expenses | 56.2% | -5.1% | 63.5% | 77.3% | 55.2% |
| Revenue composition info | |||||
|---|---|---|---|---|---|
| Total revenue (unrestricted & restricted) | $2,336,395 | $2,535,926 | $2,727,620 | $3,937,061 | $3,944,696 |
| Total revenue, % change over prior year | 58.7% | 8.5% | 7.6% | 44.3% | 0.2% |
| Program services revenue | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Membership dues | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Investment income | 0.1% | 1.3% | 1.8% | 1.7% | 1.6% |
| Government grants | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| All other grants and contributions | 99.5% | 98.0% | 97.7% | 96.2% | 94.4% |
| Other revenue | 0.4% | 0.6% | 0.5% | 2.1% | 4.1% |
| Expense composition info | |||||
|---|---|---|---|---|---|
| Total expenses before depreciation | $1,520,996 | $2,694,781 | $1,803,007 | $1,906,496 | $5,294,517 |
| Total expenses, % change over prior year | -22.1% | 77.2% | -33.1% | 5.7% | 177.7% |
| Personnel | 3.3% | 2.0% | 2.6% | 11.7% | 9.6% |
| Professional fees | 4.9% | 4.5% | 8.4% | 8.6% | 3.9% |
| Occupancy | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Interest | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Pass-through | 84.9% | 90.1% | 80.4% | 74.6% | 83.0% |
| All other expenses | 6.9% | 3.3% | 8.6% | 5.1% | 3.6% |
| Full cost components (estimated) info | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Total expenses (after depreciation) | $1,520,996 | $2,694,781 | $1,803,007 | $1,906,496 | $5,294,517 |
| One month of savings | $126,750 | $224,565 | $150,251 | $158,875 | $441,210 |
| Debt principal payment | $0 | $0 | $0 | $0 | $0 |
| Fixed asset additions | $0 | $0 | $0 | $0 | $0 |
| Total full costs (estimated) | $1,647,746 | $2,919,346 | $1,953,258 | $2,065,371 | $5,735,727 |
Capital structure indicators
| Liquidity info | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Months of cash | 11.6 | 3.8 | 7.5 | 10.3 | 5.9 |
| Months of cash and investments | 14.0 | 9.0 | 22.6 | 26.2 | 20.4 |
| Months of estimated liquid unrestricted net assets | 9.6 | 4.8 | 14.8 | 23.3 | 15.0 |
| Balance sheet composition info | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Cash | $1,465,236 | $842,345 | $1,121,504 | $1,637,650 | $2,611,762 |
| Investments | $314,198 | $1,187,693 | $2,271,278 | $2,519,264 | $6,399,049 |
| Receivables | $240,497 | $102,265 | $120,581 | $1,043,969 | $1,063,734 |
| Gross land, buildings, equipment (LBE) | $0 | $0 | $0 | $0 | $0 |
| Accumulated depreciation (as a % of LBE) | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Liabilities (as a % of assets) | 39.7% | 49.3% | 36.9% | 13.8% | 28.5% |
| Unrestricted net assets | $1,218,465 | $1,081,985 | $2,226,265 | $3,699,732 | $6,621,505 |
| Temporarily restricted net assets | $0 | $0 | N/A | N/A | N/A |
| Permanently restricted net assets | $0 | $0 | N/A | N/A | N/A |
| Total restricted net assets | $0 | $0 | $0 | $791,359 | $591,359 |
| Total net assets | $1,218,465 | $1,081,985 | $2,226,265 | $4,491,091 | $7,212,864 |
Key data checks
| Key data checks info | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Material data errors | No | No | No | No | No |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
CEO
Ann Friedholm
Ann is an experienced marketing executive, skilled at driving top line and bottom line growth for blue-chip and small-to-mid size companies, as well as non-profit organizations, by leveraging consumer insights, strategic thinking, and a solid understanding of P&L drivers. She has an 18-year track record of delivering results through strong leadership, trailblazing, collaborative team building, solid analytical skills, and being scrappy when needed!
Ann started her professional career in manufacturing at Procter & Gamble, working on the Charmin, Bounty and Puffs brands. After graduating top of her MBA class at The Marshall School of Business (University of Southern California), she then honed her marketing prowess at Nestle, working on powerhouse brands like Nesquik, Stouffer’s, and Lean Cuisine.
Ann has led the ChadTough Defeat DIPG Foundation since its founding in 2015.
Number of employees
Source: IRS Form 990
ChadTough Defeat DIPG Foundation
Officers, directors, trustees, and key employeesSOURCE: IRS Form 990
Compensation data
There are no highest paid employees recorded for this organization.
ChadTough Defeat DIPG Foundation
Board of directorsas of 05/01/2023
Board of directors data
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
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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
No data
Gender identity
Sexual orientation
No data
Disability
Equity strategies
Last updated: 07/09/2022GuideStar 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
- 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.
- 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.
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- Officer and/or Employee data for 2021, 2020, 2019, 2018, 2017
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