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

  http://www.ctf.org/

 132 East 43rd Street
Suite #418
New York NY 10017 

  212-344-6633


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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:

This score represents Form 990 data from 2019, the latest year published by the IRS.

View this organization’s historical ratings.


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Star Rated Report

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Program Expense

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:

  • Full Credit: There has been no diversion of assets within the last two years.

  • Partial Credit: There has been a diversion of assets within the last two years and the charity has used Schedule O on the Form 990 to explain: the nature of the diversion, the amount of money or property involved and the corrective action taken to address the matter. In this situation, we deduct 7 points from the charity's Accountability and Transparency score.
  • No Credit: There has been a diversion of assets within the last two years and the charity's explanation on Schedule O is either non-existent or not sufficient. In this case, we deduct 15 points from the charity's Accountability and Transparency score.
(Less)
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.

  • Full Credit: The charity's audited financials were prepared by an independent accountant with an audit oversight committee.

  • Partial Credit: The charity's audited financials were prepared by an independent accountant, but it did not have an audit oversight committee. In this case, we deduct 7 points from the charity's Accountability and Transparency score.
  • No Credit: The charity did not have its audited financials prepared by an independent accountant. In this case, we deduct 15 points from the charity's Accountability and Transparency score.
(Less)
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 have expressed extreme concern about the use of their personal information by charities and the desire to have this information kept confidential. The exchanging and sale of lists for telemarketing and the mass distribution of "junk mail," among other things, can be minimized if the charity assures the privacy of its donors. Privacy policies are assigned to one of the following categories:

  • Yes: This charity has a written donor privacy policy published on its website, which states unambiguously that (1) it will not share or sell a donor's personal information with anyone else, nor send donor mailings on behalf of other organizations or (2) it will only share or sell personal information once the donor has given the charity specific permission to do so.

  • Opt-out: The charity has a written privacy policy published on its website which enables donors to tell the charity to remove their names and contact information from lists the charity shares or sells. How a donor can have themselves removed from a list differs from one charity to the next, but any and all opt-out policies require donors to take specific action to protect their privacy.
  • No: This charity either does not have a written donor privacy policy in place to protect their contributors' personal information, or the existing policy does not meet our criteria.

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

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 PublishedForm 990 FYEOverall ScoreOverall Rating
Rating Version: 2.1
4/1/20212019 92.60
10/1/20192018 87.86
12/1/20182017 85.15
2/1/20182016 90.25
5/1/20172015 92.41
6/1/20162014 92.23
Rating Version: 2.0
10/1/20152014 93.50
5/1/20152013 93.07
12/1/20132012 93.21
2/1/20132011 94.98
12/23/20112010 93.12
9/20/20112009 96.98
Rating Version: 1.0
4/1/20112009 95.73
10/1/20092008 95.74
10/1/20082007 89.94
10/1/20072006 88.11
10/1/20062005 80.76
7/1/20052004 85.05
2/1/20052003 81.33

...   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.

Learn more about Impact & Results.

Do you work at Children's Tumor Foundation? Join the waitlist for an updated Impact & Results score.


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Additional Information

Unscored

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Largest Programs

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 - THE CHILDREN'S TUMOR FOUNDATION SUPPORTS NF RESEARCH THROUGH A RANGE OF FUNDING MECHANISMS. OUR INVESTMENTS IN RESEARCH ARE THREE-FOLD: 1) TO ATTRACT TALENTED INVESTIGATORS TO NF RESEARCH;  ... (More)


$2,691,714

Spent in most recent FY

28%

Percent of program expenses


PUBLIC EDUCATION AND PATIENT SUPPORT - THE CHILDREN'S TUMOR FOUNDATION ENGAGES IN PUBLIC EDUCATION THROUGH ITS WEBSITE, QUARTERLY NEWSLETTERS, MEDIA COVERAGE, AND ITS NATIONAL PROGRAMS. THROUGH OUR NF ... (More)


...   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.


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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

Organization Leadership


Annette Bakker

President

Tracy Galloway

Chair

...   Culture & Community


This score provides an assessment of the organization's engagement with the constituents it serves, a practice we term Constituent Feedback. When organizations listen to constituents, they are able to better deliver on programs and meet the needs of stakeholders. A future version of this Beacon will also assess an organization's people operations and its Diversity, Equity and Inclusion (DEI) metrics.


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 data. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile. This data will provide the basis for the initial evaluation of Culture & Community.

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.


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Culture & Community Report

Unscored

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Constituent Feedback

Constituent Feedback


Constituent Feedback and Listening Practice data are not available for this organization. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile. This data will provide the basis for the initial evaluation of Culture & Community.


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. We award every nonprofit that completes the Candid survey full credit for this Beacon, in recognition of their willingness to publicly share this information with the nonprofit and philanthropic communities. Although the data is not evaluated for quality at this time, future iterations of this Beacon will include third party or other data that will serve to validate the information provided by the nonprofit.

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. Our partnership with Feedback Labs and Guidestar by Candid, and other partners including Fund for Shared Insight, GlobalGiving, and Keystone Accountability, enables us to launch the first version of this beacon with Constituent Feedback information collected on Candid's site.


Feedback practices have been shown to support better Diversity, Equity, and Inclusion outcomes, an essential area of assessment that we intend to further expand and develop in the future. Feedback Labs has documented several studies which indicate that beyond achieving organizational goals, nonprofits that are attentive and responsive to concerns and ideas raised by beneficiaries establish stronger relationships with the people they serve, promote greater equity, and empower constituents in ways that can help to ensure better long-term outcomes. You can find resources to help nonprofits improve their feedback practices here.

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