Disease, Disorders, Medical Disciplines

Force-Facing Our Risk of Cancer Empowered

  • Tampa, FL
  • www.facingourrisk.org

Mission Statement

To provide unbiased information and resources regarding hereditary breast and ovarian cancer. To provide support to families and individuals affected by hereditary breast and ovarian cancer. To raise awareness of hereditary breast and ovarian cancer. To advocate for the community affected by hereditary breast and ovarian cancer. To promote research specific to hereditary breast and ovarian cancer. To reduce disparities among underserved populations by promoting access to information, resources and clinical trials specific to hereditary breast and ovarian cancer.

Main Programs

  1. FORCE: Facing Our Risk of Cancer Empowered
  2. Joining FORCEs Conference
  3. XRAYS
Service Areas

Self-reported

National

International

ruling year

1999

Chief Executive Officer since 2013

Self-reported

Ms. Barbara Pfeiffer

Executive Director

Self-reported

Sue Friedman

Keywords

Self-reported

breast cancer, ovarian cancer, genetic testing, hereditary cancer, BRCA

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Also Known As

FORCE

EIN

65-0927702

 Number

7765212057

Contact

Cause Area (NTEE Code)

Cancer (G30)

IRS Filing Requirement

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

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

FORCE provides education, support, promotes and conducts research, and advocates for policy changes to improve the lives of people affected by hereditary cancers.
FORCE’s programs provide peer support for people who are facing challenging medical decisions around inherited cancer by matching people with others who have faced similar challenges. We provide expert-reviewed, evidence-based information on medical options for people facing hereditary breast and ovarian cancer. We improve access to care by influencing key health policy issues surrounding cancer detection, prevention, and treatment. We conduct comparative effectiveness research to generate evidence on medical options to improve health outcomes. All of these areas: peer support, education and medical decision-making support, research and advocacy improve the lives of people and families affected by hereditary breast and ovarian cancer.

Programs

Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Program 1

FORCE: Facing Our Risk of Cancer Empowered

Website established in 1999. Site receives over 500,000 hits per month. Internet-based services include: electronic forums for people affected by hereditary breast and ovarian cancer. Resource guide. Links to research articles specific to hereditary breast and ovarian cancer. Toll-free telephone peer support helpline for individuals affected by or concerned about hereditary breast and ovarian cancer established December 2003. Brochures and information packets available with information on hereditary breast and ovarian cancer and on genetic discrimination.

Category

Population(s) Served

Budget

Program 2

Joining FORCEs Conference

The largest international conference for people affected by hereditary cancer and the researchers , health care providers and organizations that serve the community.

Category

Health Care

Population(s) Served

Female Adults

Male Adults

Budget

$485,000

Program 3

XRAYS

FORCE developed our eXamining the
Relevance of Articles for Young
Survivors (XRAYS) program to empower young breast cancer survivors and high-risk women by providing tools for evaluating reports of new breast cancer-related research. Funded by the CDC, XRAYS will provide reviews and ratings of news media articles on breast cancer research to help young breast cancer survivors better understand research that is relevant to them.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Female Adults

Budget

$350,000

Charting Impact

Self-reported by organization

Five powerful questions that require reflection about what really matters - results.

  1. What is the organization aiming to accomplish?
    FORCE aims to accomplish the following:

    • reach every person in the United States at high risk for, affected by, or concerned about hereditary cancer and provide them the resources and information that they need to live the best and healthiest lives possible.
    • improve clinical outcomes through clinical research specific to hereditary breast and ovarian cancer.
    • assure that every person in the US has access to the clinical services needed to learn if they are at high risk for hereditary cancer cancer, lower their cancer risk, and live the best life possible after hereditary cancer.
    • assure that policies regarding clinical research, legal protections, and access to health care take into account the specific needs and concerns of the hereditary cancer community.
  2. What are the organization's key strategies for making this happen?
    Our strategies for achieving our mission are to focus our efforts on programs that fall within our four pillars: education and awareness, support, research, and advocacy and policy.

    Our support programs include:

    • FORCE Academy – Volunteer Training Program
    • Face to Face Support Groups
    • Toll Free Helpline

    Our education and awareness programs include:
    • Website
    • Biannual Newsletter
    • Annual Conference
    • Behind the Headlines Research Summaries

    Our research programs include:

    • Clinical Trial Matching Tool
    • ABOUT Patient Powered Research Registry
    • Research Recruitment

    And our policy and advocacy programs include:

    • FORCE Research Advocacy Training (FRAT) Program
    • Advocacy Outreach Activities
  3. What are the organization's capabilities for doing this?
    FORCE has a staff of 12 individuals who provide effort to achieve these goals. Our staff includes a Chief Executive Officer, Executive Director, VP of Operations, VP of Volunteer Programs, VP of Marketing, VP of Education, VP of Advocacy and Community Affairs, Director of Development, Director of Outreach, Administrative Assistant, and Research Coordinator, and a National Helpline Director. We have over 200 trained volunteers who have completed our FORCEAcademy Training Program and who provide local support, media outreach and local awareness. We have an advisory board of 30 experts from several disciplines including: oncology, genetics, psychology, gynecology, health policy, and fertility who review all educational materials. FORCE has almost 17 years of expertise serving the hereditary cancer community.
  4. How will they know if they are making progress?
    All our programs include metrics that measure impact including surveys and evaluations to users. Additionally, our metrics include overall growth of our organization in key areas such as research recruitment, trained volunteers, program usage metrics (#’s of people who attend support groups, use our databases, etc.) Some specific metrics include:

    • Enrollees in our research registry
    • # of Research collaborations and outcomes
    • attendance at our support group meetings
    • volunteers who have completed training
    • attendance, satisfaction levels, and information gained at our annual conference

  5. What have and haven't they accomplished so far?
    Our accomplishments include:

    • 9 annual conferences with an average attendance of 600
    • Built the first research registry created & governed by the community we serve
    • Enrollment of 6500 into research studies
    • In-depth volunteer training programs through our FORCE Academy
    • Awarded a 5 year CDC grant to create a program to review and translate research articles in the media into lay terms

    The things we have not accomplished so far:
    • We are at 50% of our goal to enroll 12,000 people in research and continue to focus our efforts on recruitment.
    • As each person’s experience with hereditary cancer is so unique, we are working to roll out a program that will provide personalized support.
    • We continue to work to change health care policies in order to assure that every member of the community we serve has access to quality medical care as outlined by national guidelines.
    • People are still dying of hereditary cancer. In many cases this is due to lack of awareness about the signs of hereditary cancer, in other cases it’s due to lack of access to medical technology that has been shown to improve outcomes, and in other cases it is because the disease was too advanced or aggressive. Loss of lives can be mitigated by more awareness and education, better health policies and enforcement of existing health policies, and more research specific to hereditary cancer.
Service Areas

Self-reported

National

International

Social Media

Blog

External Reviews

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

FORCE-FACING OUR RISK OF CANCER EMPOWERED INC
Fiscal year: Jan 01-Dec 31
Yes, financials were audited by an independent accountant.

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  • Board Chair, Board Co-Chair and Board Members
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Operations

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

Force-Facing Our Risk of Cancer Empowered

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2015, 2014 and 2013
  • Board Chair, Board Co-Chair and Board Members
  • Access to the GuideStar Community
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Chief Executive Officer

Ms. Barbara Pfeiffer

Executive Director

Sue Friedman

BIO

Barbara discovered her BRCA1 mutation in 2003 after her mother had been battling breast cancer for over 12 years. Barbara's volunteer work with FORCE began the following year and continued to expand. Under her leadership, the volunteer operations of the organization grew to 75 groups nationwide. In 2012 Barbara assumed the full time role of Chief Executive Officer, leading a growing staff as it carries out the strategic plans and policies of FORCE. A former Microsoft Corporation executive, Barbara brings more than 25 years of business experience to FORCE's operations.

Governance

BOARD CHAIR

Ellyn Davidson DVM

Brogan Partners

Term: July 2015 - July 2017

BOARD LEADERSHIP PRACTICES

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices. Self-reported by organization

No

BOARD ORIENTATION & 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?

No

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Yes

ETHICS & 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?