Mission: Founded in 1978 as the National Neurofibromatosis Foundation, The Children's Tumor Foundation is a medical foundation dedicated to improving the health and well bein ... (More)
Children's Tumor Foundation is a 501(c)(3) organization, with an IRS ruling year of 1984, and donations are tax-deductible.
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Contact Information
132 East 43rd Street
Suite #418
New York NY 10017
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Star Rating System by Charity Navigator
Charity Navigator evaluates a nonprofit organization’s financial health including measures of stability, efficiency and sustainability. We also track accountability and transparency policies to ensure the good governance and integrity of the organization.
Exceptional
This charity's score is 92.60, earning it a 4-Star rating. Donors can "Give with Confidence" to this charity.
This score is calculated from two sub-scores:
Finance: 89.54 View details
Accountability & Transparency: 100.00 View details
This score represents Form 990 data from 2019, the latest year published by the IRS.
View this organization’s historical ratings.
Star Rated Report
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Program Expense Ratio
83.4%
The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s).
This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver. Dividing a charity's average program expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Administrative Expenses
8.0%
As reported by charities on their IRS Form 990, this measure reflects what percent of its total budget a charity spends on overhead, administrative staff and associated costs, and organizational meetings. Dividing a charity's average administrative expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Fundraising Expenses
8.5%
This measure reflects what a charity spends to raise money. Fundraising expenses can include campaign printing, publicity, mailing, and staffing and costs incurred in soliciting donations, memberships, and grants. Dividing a charity's average fundraising expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Liabilities to Assets Ratio
7.9%
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990).
Part of our goal in rating the financial performance of charities is to help donors assess the financial capacity and sustainability of a charity. As do organizations in other sectors, charities must be mindful of their management of total liabilites in relation to their total assets. This ratio is an indicator of an organization’s solvency and or long term sustainability. Dividing a charity's total liabilities by its total assets yields this percentage.
Source: IRS Form 990
Fundraising Efficiency
$0.08
The amount spent to raise $1 in charitable contributions. To calculate a charity's fundraising efficiency, we divide its average fundraising expenses by the average total contributions it receives. We calculate the charity's average expenses and average contributions over its three most recent fiscal years.
Source: IRS Form 990
Working Capital Ratio
1.46 years
Determines how long a charity could sustain its level of spending using its net available assets, or working capital, as reported on its most recently filed Form 990. We include in a charity's working capital unrestricted and temporarily restricted net assets, and exclude permanently restricted net assets. Dividing these net available assets in the most recent year by a charity's average total expenses, yields the working capital ratio. We calculate the charity's average total expenses over its three most recent fiscal years.
Source: IRS Form 990
Program Expense Growth
-4.28%
We compute the average annual growth of program expenses using the following formula: [(Yn/Y0)(1/n)]-1, where Y0 is a charity's program expenses in the first year of the interval analyzed, Yn is the charity's program expenses in the most recent year, and n is the interval of years passed between Y0 and Yn.
Source: IRS Form 990
Governance
Charity Navigator looks to confirm on the Form 990 that the organization has these governance practices in place.
Sources Include: IRS Form 990
| Governance: | |
|---|---|
| Independent Voting Board Members ... (More) | |
| No Material Diversion of Assets ... (More) A diversion of assets – any unauthorized conversion or use of the organization's assets other than for the organization's authorized purposes, including but not limited to embezzlement or theft – can seriously call into question a charity's financial integrity. We check the charity's last two Forms 990 to see if the charity has reported any diversion of assets. If the charity does report a diversion, then we check to see if it complied with the Form 990 instructions by describing what happened and its corrective action. This metric will be assigned to one of the following categories:
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| Audited Financials Prepared by Independent Accountant ... (More) Audited financial statements provide important information about financial accountability and accuracy. They should be prepared by an independent accountant with oversight from an audit committee. (It is not necessary that the audit committee be a separate committee. Often at smaller charities, it falls within the responsibilities of the finance committee or the executive committee.) The committee provides an important oversight layer between the management of the organization, which is responsible for the financial information reported, and the independent accountant, who reviews the financials and issues an opinion based on its findings. We check the charity's Form 990 reporting to see if it meets this criteria.
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| Does Not Provide Loan(s) to or Receive Loan(s) From Related Parties ... (More) | |
| Documents Board Meeting Minutes ... (More) | |
| Distributes 990 to Board Before Filing ... (More) | |
| Compensates Board ... (More) |
Policies
Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization has these policies in place.
Sources Include: IRS Form 990 and organization's website
| Policies: | |
|---|---|
| Conflict of Interest ... (More) | |
| Whistleblower ... (More) | |
| Records Retention and Destruction ... (More) | |
| CEO Compensation Process ... (More) | |
| Donor Privacy ... (More) Donors can be reluctant to contribute to a charity when their name, address, or other basic information may become part of donor lists that are exchanged or sold, resulting in an influx of charitable solicitations from other organizations. Our analysts check the charity's website to see if the organization has a donor privacy policy in place and what it does and does not cover. Privacy policies are assigned to one of the following categories:
The privacy policy must be specific to donor information. A general website policy which references "visitor" or "user" personal information will not suffice. A policy that refers to donor information collected on the website is also not sufficient as the policy must be comprehensive and applicable to both online and offline donors. The existence of a privacy policy of any type does not prohibit the charity itself from contacting the donor for informational, educational, or solicitation purposes. (Less) |
Transparency
Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization makes this information easily accessible.
Sources Include: IRS Form 990 and organization's website
| Transparency: | |
|---|---|
| CEO Salary Listed on 990 ... (More) | |
| Board of Directors Listed on Website ... (More) | |
| Key Staff Listed on Website ... (More) | |
| Audited Financial Statements on Website ... (More) | |
| Form 990 Available on Website ... (More) |
Additional Information
Unscored
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Total Revenue and Expenses
This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.
Salary of Key Persons
Presented here are this organizations key compensated staff members as identified by our analysts. This compensation data includes salary, cash bonuses and expense accounts and is displayed exactly how it is reported to the IRS. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. In some cases, these amounts may include compensation from related organizations. Read the IRS policies for compensation reporting
Annette Bakker, President
$327,948 (2.91% of Total Expenses)
Current CEO and Board Chair can be found in the Leadership & Adaptability report below.
Source: IRS Form 990 (page 7), filing year 2019
Business Master File Data
Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website
Activities:
Scientific research (diseases) (BMF activity code: 161)
Foundation Status:
Organization which receives a substantial part of its support from a governmental unit or the general public 170(b)(1)(A)(vi) (BMF foundation code: 15)
Affiliation:
Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)
Data Sources: IRS Forms 990
The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to view this organization's Forms 990 on the IRS website (if any are available).
Pandemic Response
Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them. Charities may submit their own pandemic responses through their nonprofit portal.
Children's Tumor Foundation reported being impacted by COVID-19 in the following ways:
Program Delivery
Fundraising Capacity
Revenue
Grants Sent
How COVID-19 impacted the organization's operations financially:
In 2020, we ended the year $1.3 million under budget in revenue. If we had not received the PPP loan, we would have been $2 million under budget. Many of our events had to be postponed, cancelled, or held virtually, which caused our overall programs to be under budget. On the expense side we did experience some savings due to events being cancelled or postponed. Our event expenses went down, but we did spend more on consultants to help us create virtual events. We were unable to meet our Grant Expense budget due to laboratories not operating as they normally would, due to the pandemic. We spent $1.4 million less on Grants than budgeted.
How COVID-19 impacted the organization's delivery of programs:
A number of our fundraising events were cancelled/postponed because of the pandemic, but where possible, events were converted into virtual experiences (including new ones we created in this new environment). There were varying degrees of success but what we learned was that the livestream environment enabled us to deliver content and experiences to new audiences that had been unable to attend in person during the pre-covid time. We sent out less in research grants due to laboratories not functioning as they normally do. Similar to our fundraising events, our clinical/patient events were impacted and either canceled or done virtually. We did increase our use of online webinars to engage with the patient community and disseminate the latest information.
How this organization adapted to changing conditions caused by COVID-19:
Our organization adapted by doing as many of our fundraising events virtually as possible. We created a new virtual streaming event that was very successful. Operationally, we allowed our staff to work remotely so that we did not have to stall operations. We also increased the use of (and invested in) technology so that this all could happen.
Innovations the organization intends to continue permanently after the pandemic:
We intend to keep the virtual component of our events to allow greater access to our constituents. Many of our events going forward will be ‘hybrid’, recognizing there is value both in the in-person experience as well as the ability to reach new, potentially underserved audiences. We also ended our office space lease and have entered into an agreement with a flexible working space.
Historical Ratings
| Date Published | Form 990 FYE | Overall Score | Overall Rating |
| Rating Version: 2.1 | |||
| 4/1/2021 | 2019 | 92.60 | |
| 10/1/2019 | 2018 | 87.86 |  |
| 12/1/2018 | 2017 | 85.15 | |
| 2/1/2018 | 2016 | 90.25 | |
| 5/1/2017 | 2015 | 92.41 | |
| 6/1/2016 | 2014 | 92.23 | |
| Rating Version: 2.0 | |||
| 10/1/2015 | 2014 | 93.50 | |
| 5/1/2015 | 2013 | 93.07 | |
| 12/1/2013 | 2012 | 93.21 | |
| 2/1/2013 | 2011 | 94.98 | |
| 12/23/2011 | 2010 | 93.12 | |
| 9/20/2011 | 2009 | 96.98 | |
| Rating Version: 1.0 | |||
| 4/1/2011 | 2009 | 95.73 | |
| 10/1/2009 | 2008 | 95.74 | |
| 10/1/2008 | 2007 | 89.94 | |
| 10/1/2007 | 2006 | 88.11 | |
| 10/1/2006 | 2005 | 80.76 | |
| 7/1/2005 | 2004 | 85.05 | |
| 2/1/2005 | 2003 | 81.33 | |
Previous: Finance & Accountability / Next: Leadership & Adaptability
Impact & Results
This score estimates the actual impact a nonprofit has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.
Impact & Results Score
Not Currently Scored
Children's Tumor Foundation cannot currently be evaluated by our Encompass Rating Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
Do you work at Children's Tumor Foundation? Join the waitlist for an updated Impact & Results score.
Additional Information
Unscored
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Largest Programs
Children's Tumor Foundation reported its two largest programs on its FY 2019 Form 990 as:
$6,751,593
Spent in most recent FY
71%
Percent of program expenses
Research
$2,691,714
Spent in most recent FY
28%
Percent of program expenses
Public Education and Patient Support
Previous: Impact & Results / Next: Culture & Community
Leadership & Adaptability
This score provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.
Leadership & Adaptability Score
100
out of 100
The score earned by Children's Tumor Foundation is a passing score. This score has no effect on the organization's Star Rating.
Encompass Rating V4 provides an evaluation of the organization's Leadership & Adaptability through the nonprofit organization submitting a survey response directly to Charity Navigator.
Leadership & Adaptability Report
100
of 100 points
Mission
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s mission
Founded in 1978, the Children’s Tumor Foundation (CTF) began as the first grassroots organization dedicated to finding treatments for all neurofibromatosis (NF). Today, CTF is a highly recognized global nonprofit foundation, the leading force in the fight to end all forms of NF, and a model for innovative research endeavors. The mission of the Children's Tumor Foundation is to drive research, expand knowledge, and advance care for the NF community.
Source: Nonprofit submitted responses
Vision
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
Our vision is to End NF.
Source: Nonprofit submitted responses
Strategic Goals
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: Increase investments in research, improve and standardize patient care.
Goal Type: New program(s) based on observed changes in needs among our constituencies/communities served.
Goal Two: Drive revenue through volunteer engagement, cultivation and stewardship, and data
Goal Type: Focus on core programs to achieve mission and scale back on programs not seen as core.
Goal Three: Strengthen communication of the CTF story with a focus on audience segmentation
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
Source: Nonprofit submitted responses
Leadership Development
The nonprofit provides evidence of investment in leadership development
Describe an investment in leadership
Our staff is always encouraged to do professional development. We allow each department to budget for their staff training and development. In the last 12-18 months we have paid a portion of tuition for staff members as well as membership fees for associations and fees for webinars and courses. Our PEO also offers reimbursement for our staff for continuing education as well as offers free trainings and courses available to all of our staff.
Source: Nonprofit submitted responses
Mobilizing for Mission
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
This organization mobilizes for mission in the following ways:
Strategic Partnerships
Networks of Collective Impact Efforts
Thought Leadership
Raising Awareness
Community Building
Policy Advocacy
What are this organization’s external mobilizaton efforts?
Usually the NF journey starts with an online search that leads to inaccurate or outdated information, and so we pride ourself on being a safe haven for all who need information and support. We provide the most up-to-date NF knowledge on our website and in our patient brochures, newsletters, webinars, and videos. We also drive a dynamic and engaging presence on social media connecting patients and families worldwide, ensuring that those who don’t have NF support in their own community can find it through the global CTF family. The Foundation breaks through with impressive media outreach and PR efforts that spread the message that NF is important and that NF patients deserve support for bettered lives. Our multichannel approach in print, digital, TV, and radio results in many hundreds of media pickups each year, and brings the NF story to hundreds of millions of people worldwide.
Source: Nonprofit submitted responses
Story of Adaptability
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
In order to protect patients, volunteers, and staff, we pivoted to a virtual model in March 2020. Due to the support and resilience of the NF community, our mission continued unabated, bringing NF awareness and engagement with the Foundation’s programs to growing audiences through new digital formats that made CTF initiatives even more accessible to all. Our community of researchers and clinicians made themselves available to the patient community through a series of webinars that informed patients and families with answers to questions that had arisen amidst the uncertainty. As May approached, which is NF Awareness Month and a key time for the NF community to spread knowledge of neurofibromatosis, the Foundation pivoted to a “Home is Where the Heart Is” theme, in recognition of the new shelter-at-home reality, and offered the NF community ways to drive the End NF mission from the safety of their homes. This concept culminated in a World NF Day livestream called the Zoomathon, with over 50 celebrities. The success of this approach fueled more creative ideas. Challenges like “how does one hold a virtual walk and still fundraise” to “how does one host a research symposium” were solved with originality and perseverance. The NF community’s energy shone through and discovered new ways to communicate virtually. One of those triumphs was the approval of the first-ever drug for a form of neurofibromatosis by the U.S. Food and Drug Administration. That news in April fueled the belief year-round that our End NF mission was too important to put on pause, as the Foundation’s pipeline of research leading to new clinical trials continues to grow for all forms of NF. That spirit of innovation carried through all facets of the Foundation’s offerings, as in-person events became virtual – from research meetings to dance events to walk/runs to galas – keeping the NF community together, even as we had to stay apart.
Source: Nonprofit submitted responses
Additional Information
Unscored
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Organization Leadership
Annette Bakker
President
Tracy Galloway
Chair
Previous: Leadership & Adaptability
Culture & Community
This score provides an assessment of the organization's culture and connectedness to the community it serves. Learn more about how and why we rate Culture & Community.
Culture & Community Score
Not Currently Scored
Children's Tumor Foundation is currently not eligible for a Culture & Community score because we have not received its Constituent Feedback or Diversity, Equity, & Inclusion data. Nonprofit organizations are encouraged to fill out the How We Listen and Equity Practices sections of their Candid profile.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
Culture & Community Report
Unscored
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Diversity, Equity, & Inclusion
This organization has not provided information regarding the diversity, equity and inclusion (DEI) practices it is presently implementing. As such, the organization has not earned a score on this metric. Charity Navigator believes nonprofit organizations implementing effective DEI policies and practices can enhance a nonprofit's decision-making, staff motivation, innovation, and effectiveness.
Methodology
We are utilizing data collected by Candid to document and assess the DEI practices implemented by the organization. Nonprofit organizations are encouraged to fill out the Equity Strategies section of their Candid profiles to receive a rating.
Learn more about the methodology.
Constituent Feedback
Constituent Feedback and Listening Practice data are not available for this organization. Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective.
Methodology
We've partnered with Candid to survey organizations about their feedback practices. Nonprofit organizations can fill out the How We Listen section of their Candid profile to receive a rating.
Learn more about the methodology.
Analysis and Research
Like the overall Encompass Rating System, the Culture & Community Beacon is designed to evolve as metrics are developed and ready for integration. Below you can find more information about the metrics we currently evaluate in this beacon and their relevance to nonprofit performance.
Constituent Feedback
Diversity, Equity, and Inclusion
