Where Your Dollars Go

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Where Your Dollars Go

FORCE is a wealth of information and support for families with hereditary cancer. My hereditary cancer journey - and that of my previvor daughter - has been so much easier because of FORCE.

Susan Davis, FORCE Outreach Coordinator and Hereditary Breast Cancer Survivor

Improving health outcomes through research:

  • Created the ABOUT Network, the first research registry maintained by and for the HBOC community. ABOUT is part of the National Patient-Centered Clinical Research Network (known as PCORnet). It provides a unique and comprehensive resource to help researchers find new therapies and cures.
  • Recruited thousands of people into HBOC-specific clinical trials and research studies, including studies of new targeted therapies, to advance research/medicine.
  • Trained advocates to assist researchers in designing and conducting research studies.  This ensures researchers consider our community’s unique needs when developing or funding new cancer studies.
  • Testified on behalf of our community to expedite research and FDA approval for new drugs for hereditary cancers, including Lynparza, the first targeted therapy for women with advanced hereditary ovarian cancer.

Advocating to improve access and protect our rights:

  • Helped pass the Genetic Information Nondiscrimination Act (GINA), which prevents employers and health insurance agencies from making decisions based on a person’s genetic makeup.
  • Successfully opposed patents on the BRCA1 and BRCA2 genes— ensuring genetic testing becomes more widely available and affordable across the country.
  • Fought to improve access to genetic information and testing for everyone who needs it.  Economic barriers and outdated policies should not stand in the way of one’s health.

Empowering medical decisions through awareness and education:

  • Held the Joining FORCEs Conference, a one-of-a-kind annual symposium that provides opportunities for the HBOC community to learn from medical and genetics professionals, network with one another, and share personal experiences. Since 2006, thousands have benefited from this unique opportunity to connect directly with experts and other people facing similar challenges. This conference has up to 800 attendees each year.
  • We offer the largest compilation of HBOC materials, including expert-reviewed information, research studies, articles, resources, and stories of individuals’ personal experiences.  We make this library available online to anyone who needs it at no cost.
  • Launched XRAYS (eXamining Relevance of Articles for Young Survivors) to deliver information about the latest breast cancer research specifically for young previvors and breast cancer survivors.
  • We undertake vital awareness outreach, distributing over 250,000 brochures to health care providers, health fairs, community events, temples and churches, and participating in media stories with over 50 million impressions annually.  Our social media community is growing and highly engaged.
  • Lobbied for and created a national Hereditary Breast and Ovarian Cancer Week and Previvor Day in September each year.  Also coined the term "Previvor" – giving a name to and connecting people who are at high risk of developing hereditary cancer, who don't have a cancer diagnosis, yet who may face difficult medical decisions.

Supporting those facing hereditary cancer with reassurance and compassion:

  • Run a network of volunteer-led peer support groups in 50 cities nationwide, providing group and individualized support to thousands of women and men each year. Over 100 group leaders provide resources and support to members and provide materials to local genetics and medical professionals.
  • Offer the only 24/7 hotline for people seeking information about hereditary cancer and their unique situations. We also run extensive message boards and offer the largest library of online resources on HBOC.
  • Launched a Peer Navigation Program (PNP) to provide personalized 1:1 support to individuals through every phase of their hereditary cancer journeys. Using a custom-designed database, we match people seeking help with peers who have had similar challenges. Participants receive information, expert-reviewed resources, and clinical trial information tailored to their needs, with the extra reassurance of working with someone who has successfully walked in their shoes.
  • Created VolunteerFORCE Academy, the first comprehensive hereditary cancer education initiative that has trained more than 250 volunteers to raise awareness about HBOC and provide appropriate resources and support for those affected by HBOC.

FORCE:Facing Our Risk of Cancer Empowered