In the late 1990s, Sue Friedman was diagnosed with breast cancer. She learned that she carried a mutation in the BRCA gene that made her more likely to develop both breast and ovarian cancers. Sue felt that none of the existing breast and ovarian cancer groups met the needs of women at high risk for both diseases: breast cancer survivors like Sue felt out-of-place in ovarian cancer groups, and vice versa. In 1999, with genetic testing a new but growing field, Sue founded Facing Our Risk of Cancer Empowered (FORCE).
As a niche organization, FORCE welcomes opportunities to collaborate with other groups like the Ovarian Cancer National Alliance. “We recognize that the power of many is stronger than the power of one,” says Lisa Schlager, FORCE’s Vice President for Community Affairs and Public Policy. “It’s important to team up and have that synergy with other organizations.” Working with the Alliance as a Partner Member is a key way in which FORCE connects to the ovarian cancer community.
At the onset, FORCE was primarily an online support group. “It was a place for people to share,” recalls Lisa. Today, FORCE offers in-person support through 65 outreach groups located throughout the United States. FORCE outreach groups hold at least four support meetings each year, raise funds for FORCE programs and its hereditary cancer research fund, and work to educate the local community and health providers about genetic risks associated with breast and ovarian cancers.
The organization’s website remains a key source of support and information, especially for women who don’t live near an outreach group. “Our goal is to provide support to people no matter where they live,” says Lisa. The FORCE website includes facts about hereditary cancer and other risks, as well as message boards that offer online support. In addition, FORCE operates a telephone help line. In 2011, the help line became bilingual, offering support in Spanish and English.
FORCE also hosts an annual conference where women and health providers can learn more about hereditary breast and ovarian cancers. Different tracks address the needs of specific groups, such as young women who want to learn about their options for risk reduction. Nurse navigators and genetic counselors can earn continuing medical education credits for attending scientific sessions at the conference. The next FORCE conference is scheduled for October 18-20 in Orlando, Florida.
Since FORCE works with families at increased risk of both breast and ovarian cancer, the group spearheaded the creation of National Hereditary Breast and Ovarian Cancer Week, which spans the week between September (Ovarian Cancer Awareness Month) and October (Breast Cancer Awareness Month). Wednesday of that week is National Previvor Day, recognizing those who are living with a high risk of cancer but have not developed the disease. Many outreach groups across the country organize events where they “pass the torch” from ovarian to breast cancer, raising awareness of the link between the two diseases.
Lisa notes that there are “still a lot of misconceptions about hereditary breast and ovarian cancer,” but thanks to groups like FORCE and a partner like the Alliance, women and health care providers are learning more about this issue every day.