Mission: SEE SCHEDULE O.

Fibrolamellar Cancer Foundation is a 501(c)(3) organization, with an IRS ruling year of 2010, and donations are tax-deductible.

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Contact Information

  www.fibrofoundation.org

 20 HORSENECK LN STE 2
Greenwich CT 06830-6300



...  ...  ...  ...  

Encompass Rating System by Charity Navigator


Overall Score

95

out of 100

This charity's score is a passing score.
This overall score is calculated entirely from a single beacon score: 90% Finance & Accountability and 10% Leadership & Adaptability


Learn about the Encompass Rating System: Overview | FAQ | Release Notes


This organization is potentially eligible for a Charity Navigator Star Rating. Vote Now to request to have our analyst team rate Fibrolamellar Cancer Foundation for a Star Rating. The organization currently has 3 votes.

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...   Finance & Accountability


This score provides an assessment of a nonprofit's financial health (stability, efficiency and sustainability) and its commitment to governance practices and policies.


Finance & Accountability Score

94

out of 100

The score earned by Fibrolamellar Cancer Foundation is a passing score

This V4 of the Finance & Accountability Score provides a baseline measure of an organization’s health including the indicators listed in the report below.

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



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Finance & Accountability Report

94

of 100 points

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Program Expense

Program Expense Ratio

75.05%

Higher effect on score

More data  


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.


Program Expense Percentage

Amount of Credit Received

70% or higherFull Credit
60% - 69.9%Partial Credit
Below 50%Zero Points for Both Program Expense percentage AND Liabilities to Assets

Source: IRS Form 990

Board Composition

11/12 Independent

Higher effect on score


Charity Navigator looks for at least 3 board members, with more than 50% of those members identified as independent (not salaried).


The presence of an independent governing body is strongly recommended by many industry professionals to allow for full deliberation and diversity of thinking on governance and other organizational matters.


Source: IRS Form 990

Independent Audit or Financial Review

Audited

Higher effect on score


An Audit, Review, or Compilation provides important information about financial accountability and accuracy. Organizations are scored based on their Total Revenue Amount:

Total Revenue Amount

Expectation to Receive Credit

$1 million or higherExpected to complete an audit
$250,000 - $1 millionExpected to complete an audit, review, or compilation
Less than $250,000No expectation (removed from scoring methodology)

Source: IRS Form 990

Liabilities to Assets Ratio

14.82%

Lower effect on score


The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990). This ratio is an indicator of an organization’s solvency and/or long-term sustainability.

Liabilities to Assets Ratio

Amount of Credit Received

Less than 50%Full Credit
50% - 59.9%Partial Credit
60% or moreNo Credit

Source: IRS Form 990

Website

Listed

Lower effect on score


Charity Navigator looks for a website on the Form 990 as an accountability and transparency metric.


Nonprofits act in the public trust and reporting publicly on activities is an important component.


Source: IRS Form 990

Conflict of Interest Policy

Listed

Lower effect on score


Charity Navigator looks for the existence of a conflict of interest policy on the Form 990 as an accountability and transparency measure.


This policy protects the organization and by extension those it serves, when it is considering entering into a transaction that may benefit the private interest of an officer, director and/or key employee of the organization.


Source: IRS Form 990

Board Meeting Minutes

Documented

Lower effect on score


Charity Navigator looks to confirm on the Form 990 that the organization has this process in place as an accountability and transparency measure.


An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference.


Source: IRS Form 990

Document Retention and Destruction

Missing

Lower effect on score


Charity Navigator looks for the existence of a document retention and destruction policy per the Form 990 as an accountability and transparency measure.


This policy establishes guidelines for the handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promote data integrity.


Source: IRS Form 990

Whistleblower Policy

Missing

Lower effect on score


Charity Navigator looks for the existence of a whistleblower policy per the Form 990 as an accountability and transparency measure.


This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report financial or other types of mismanagement.


Source: IRS Form 990

Additional Information

Unscored

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

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 up to five of this organization's highest compensated employees. 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



JOHN HOPPER, PRESIDENT

$168,667


DR MARK FURTH, DIRECTOR

$150,000


MARNA O DAVIS, CHAIRPERSON

$0


CHARLES W BEERMAN, DIRECTOR

$0


DEREK GILCHRIST, DIRECTOR, SECRETARY

$0


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:

Activity data not reported from the IRS


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.


Fibrolamellar Cancer Foundation reported being impacted by COVID-19 in the following ways:
  • Program Delivery

  • Fundraising Capacity

  • Revenue

  • Staffing


How COVID-19 impacted the organization's operations financially:

Canceling our major fund raising event was a significant loss (donations down 20%). Some of this was offset by two generous donors and a Chan Zuckerberg Initiative grant which helped maintain staff size and research efforts. The lack of travel also helped regarding T&E expenses typically needing funding during a non Covid environment.


How COVID-19 impacted the organization's delivery of programs:

We moved every major program to zoom and postponed one until 2022. The positive impact is we were able to create a series of educational seminars reaching a broader audience on key topics of interest to our cancer community.


How this organization adapted to changing conditions caused by COVID-19:

All employees worked from home vs. at the office. We created an ongoing weekly "all staff virtual meeting" with individual department head meetings during the week. All financials and other operating needs were addressed via remote.


Innovations the organization intends to continue permanently after the pandemic:

Staff meeting schedules have been very productive and will stay in place. Ongoing zoom educational series for our cancer patients will continue. Reducing travel and replacing with zooms will continue (but will not exclude travel to key/important meetings). Face time vs. simple phone call meetings will continue - keeping a strong personal connection. Maintaining high quality software and technology products for remote work will continue.


...   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

Fibrolamellar Cancer 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 Fibrolamellar Cancer 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



Fibrolamellar Cancer Foundation reported its largest program on its FY 2019 Form 990 as:


$1,419,590

Spent in most recent FY

100%

Percent of program expenses


SEE SCHEDULE O.


...   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 Fibrolamellar Cancer Foundation is a passing score.

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


FCF’s mission is three-fold: Find a cure and treatment options for fibrolamellar. Raise awareness of this disease. Connect and support the fibrolamellar community of patients and their families.


Source: Nonprofit submitted responses

Vision

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.


All people with fibrolamellar cancer will be diagnosed early, supported compassionately, treated effectively and ultimately cured.


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: Fibrolamellar has no curative therapies or standard of care - and has a dismal 5 - year survival rate of only 20%. This requires constantly reviewing and funding of new research programs.

Goal Type: New program(s) based on observed changes in needs among our constituencies/communities served.


Goal Two: FCF supports critical research especially from strong academic research centers. Since 2016 we expanded our research network to over 20 institutions, plus support from major pharma companies.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Goal Three: Mission delivery means upgrading the research road map and eliminating programs with low ROI. Strategic partnerships/investments in promising research, allows budget optimization and better results.

Goal Type: Focus on core programs to achieve mission and scale back on programs not seen as core.


Source: Nonprofit submitted responses

Leadership Development

The nonprofit provides evidence of investment in leadership development


Describe an investment in leadership

Our organization has hired in the following key staff: Scientific Advisor (seasoned biotech executive); Chief Information Officer (for data and technology functions) - leveraging a McKinsey consultant who lost his wife to fibrolamellar; Marketing/Communications leader – who led a major healthcare agency. Just a few examples.

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?

We have taken leadership positions in key oncology organizations. Examples: Founding co-chair of the GI Cancers Alliance: Founding Co-Chair of the Rare Cancer Coalition; National Organization of Rare Disorders; Patient advocates with the Department of Defense cancer research review committee; Lead cancer foundation in the Chan Zuckerberg Initiative Rare as One Network. We are also feature speakers at numerous oncology conferences.

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.


COVID had enormous impact on our mission, personnel and fundraising to mention just a few. With research, we conducted 100% virtual meetings for updates and key advice necessary for our MD’s and PhD’s. We also allowed for extensions on their research; Organizationally we were very mindful on the personal impact working from home had including family/personal balance, emotional strain, work stress etc. More flexibility and more frequent in person virtual meetings helped significantly; Fundraising, FCF took a leadership position to publish a 10 - year anniversary report and sent to all those people who attended our live events. Strong marketing communications throughout the year to key donors also helped close the gap for lost revenue with our annual golf outing.

Source: Nonprofit submitted responses

...   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

Fibrolamellar Cancer 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

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

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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