FIBROLAMELLAR CANCER FOUNDATION

Greenwich, CT   |  www.fibrofoundation.org

Mission

The principal purpose of the Fibrolamellar Cancer Foundation (FCF) is to encourage, drive and fund research that will substantially improve outcomes for patients with fibrolamellar carcinoma (FLC), a rare form of liver cancer that primarily occurs in adolescents and young adults who have no history of liver disease. Given the urgent need for clinically-proven therapies for this disease, our mission is three-fold: (1) find a cure and effective treatment options for FLC; (2) connect and support the fibrolamellar community; and (3) raise awareness of this disease.

Notes from the nonprofit

The Foundation strives to make every dollar count as we seek a cure for FLC. Because so much is still unknown about the disease, finding effective treatments for the disease requires funding a range of clinical, translational and basic research. We want our investments to make a difference and help to bridge existing gaps in research. Importantly, we believe the fastest path to a cure requires researchers to work together collaboratively – rapidly sharing information, materials, and expertise. …And finally, because fibrolamellar is so rare, every patient’s participation is urgently needed to drive success. We try to catalyze that involvement in a way that can make research more efficient, effective and patient-focused.

Ruling year info

2010

Principal Officer

Kurt P Losert

Main address

20 Horseneck Lane

Greenwich, CT 06830 USA

Show more contact info

EIN

27-0341021

NTEE code info

Cancer (G30)

Fund Raising and/or Fund Distribution (T12)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Fibrolamellar carcinoma (FLC) is an extremely rare form of liver cancer that strikes otherwise healthy adolescents and young adults. Currently, there are no treatments for the disease other than surgery that have been proven effective. Our goal is to accelerate and fund the research necessary to identify and develop effective therapies for FLC.

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?

Fibrolamellar carcinoma research funding

Prior to the founding of FCF in 2008, fibrolamellar carcinoma received minimal research attention. Since then, FCF has committed significant funding to research studies conducted at the most prestigious and innovative research and academic institutions in the country. FCF-funded research has included a broad range of basic, translational and clinical studies. As a leading funder of FLC research, our goal is to transform the fibrolamellar research landscape. By supporting cutting-edge research, actively recruiting new investigators to the disease, and working together to understand the origin and development of FLC, we hope to create more effective therapies and ultimately find a cure for the disease.

Population(s) Served
Researchers

FCF manages and hosts periodic fibrolamellar research summits to share advances in basic and translational science as well as emerging clinical data and real-world practice patterns. Our goal is to accelerate the pace of research into this rare disease by encouraging deep collaborations in the research community and protecting disclosure of emerging findings with mandatory multiparty NDA. In addition, we aim to continually refine and revisit our priorities for research investment and analysis by hosting regular, focused meetings of multi-institutional working groups on key components of the FLC research agenda.

Population(s) Served
Researchers

The Foundation actively manages a series of educational efforts including a website, social media programs, educational webinars and other communications to provide disease, treatment and resource information to patients affected by FLC, drive awareness of the disease, and inform clinicians and researchers of the latest advances in the field.

Population(s) Served
Adolescents
Adults

Given the rarity of fibrolamellar carcinoma, many patients and caregivers have never met other patients dealing with the same disease. In order to help connect and support the FLC patient community, the Foundation hosts an annual Patient & Family Gathering to build and maintain relationships among those afflicted by this rare disease, as well as periodic Patient & Research Summits to encourage patient involvement in critical research activities.

Population(s) Served
Adults
Preteens
Adolescents

Where we work

Awards

Rare As One Network Grant 2020

Chan Zuckerberg Initiative (CZI)

Affiliations & memberships

National Organization of Rare Disorders (NORD) 2015

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Percentage of donations that directly fund research

This metric is no longer tracked.
Totals By Year
Related Program

Fibrolamellar carcinoma research funding

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

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.

The principal purpose of the Fibrolamellar Cancer Foundation is to encourage, drive and fund research that will substantially improve outcomes for fibrolamellar carcinoma (FLC) patients. We envision a world where all people with FLC will be diagnosed early, treated effectively and hopefully cured.

FCF is pursuing several key strategies to accelerate the development of effective therapies for FLC. We:

• Review and fund FLC-specific grant proposals that will advance our understanding of the disease, identify possible treatment options, and eventually improve diagnosis and patient outcomes.

• Assemble fibrolamellar carcinoma researchers worldwide to participate in our summits and working groups to help accelerate research progress and support rapid information sharing.

• Develop and distribute repositories of biospecimen, cell-lines and disease models that are critical to support cutting-edge research into the disease

• Encourage patients and caregivers to become actively involved in FLC research efforts, and develop programs and capabilities to support that involvement.

FCF's efforts are made possible by the generosity and actions of a committed community of donors, patients, caregivers and researchers. We have an extremely small, but motivated team of staff and volunteers that are committed to the fight. We have a strong research network consisting of over 25 highly respected institutions with experienced researchers that are recognized as experts in their fields. We have a motivated patient and caregiver community that recognizes the need to fund and drive innovative research to discover effective treatments for the disease. In addition, thanks to Charles and Marna Davis Foundation which funds the operating costs of the Foundation, 100% of every dollar donated directly supports high-impact research efforts.

When the foundation was started in 2008, little information was available about the disease. Today, thanks to the generosity of our donors and the efforts of capable researchers, that situation has changed considerably. Important milestones achieved include:
(1) Over $11.1 million in research funding has been invested in over 24 research institutions;
(2) A genetic mutation common to almost all fibrolamellar tumors, has been discovered and it proves to be the
driver mutation of this cancer;
(3) Several important pathways critical to disease development and growth have been identified;
(4) A large and incredibly talented team of dedicated researchers are collaborating with others on this cancer;
(5) The disease has gotten recognition and incremental funding from major players in rare disease research, including the National Institutes of Health (NIH) and the Chan Zuckerberg Initiative;
(6) Four clinical trials specific to fibrolamellar carcinoma have been developed and launched;
(7) A centralized biobank has been established to store and distribute critical biospecimens;
(8) A few cell-line and PDX models have been established and made available to the research community.

We are highly encouraged by the progress and momentum established since the Foundation was established. However, much critical work remains to be done. Surgery is still the only treatment that is clinically-proven to improve life expectancy. No standard-of-care exists for the disease. Patients are still suffering.

We are committed to pressing forward the search for effective treatments of this devastating disease.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    The Fibrolamellar Cancer Foundation serves the patients and caregivers fighting fibrolamellar carcinoma, the clinicians serving those patients, as well as researchers who are trying to identify the underlying causes of the disease and potential treatments.

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

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

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

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Fibrolamellar Cancer Foundation (FCF) recently created a Patient Advisory Board to help improve our research, educational, and support programs with the goal of better serving the patients and families fighting this awful disease. We also have expanded our offering of webinars focused on discussing and sharing perspectives how research, emerging technologies are shaping the understanding of the disease and potential treatment directions. We are also deepening the involvement of the patient community in the review of grant applications, making patients and caregiver representatives a key part of our grant review panels.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders,

  • How has asking for feedback from the people you serve changed your relationship?

    Each of the different constituencies we serve (patients/caregivers, academic researchers) have had significantly more influence on program design and the strategic priorities of the organization. New initiatives, such as our community reviewer grant review process and our "FibroConnect" mentoring program, have been created and designed based on community feedback.

  • 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 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, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    The people we serve tell us they find data collection burdensome,

Financials

FIBROLAMELLAR CANCER FOUNDATION
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Operations

The people, governance practices, and partners that make the organization tick.

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FIBROLAMELLAR CANCER FOUNDATION

Board of directors
as of 11/03/2022
SOURCE: Self-reported by organization
Board co-chair

Marna Davis


Board co-chair

Charles Davis

Stone Point Capital

Kurt Losert

John Hopper

Anne Adler

Charles Beerman

John Craig, MD, PhD

Derek Gilcrest

Leslie Graves

Craig Martin

Tal Friedman

Organizational demographics

SOURCE: Self-reported; last updated 10/16/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data