Our visit to the FORCE Conference
We were very honored to receive an award from FORCE, which stands for “Facing Our Risk of Cancer Empowered,” whose mission is to help women face the risk of hereditary breast or ovarian cancer proactively. Our Director of Education, Susan Brown, accepted on behalf of Susan G. Komen for the Cure® and had some heartbreaking and joyous insights to share from the experience.
The conference activities really showed FORCE’s mission in action! There were information sessions from clinical experts, including past and present grantees of Susan G. Komen for the Cure. There were presentations about basic genetics, decision-making, complementary and integrative medicine, exercise, diet, hormones, writing your story, BRCA gene mutations in men, chemoprevention, menopause, and more and more, and LOTS of photographs and presentations about reconstructive surgery. One of the greatest challenges of the conference for me was deciding which session to attend!
But at least as important to attendees as the scientific and medical sessions and information was the networking – the sharing of personal stories and information. At every table and in every corner you could see heads nodding as personal stories were shared with others who had faced or were facing the same frightening and bewildering situations and incredibly difficult and life-changing decisions.
And, then there was the “show and tell” – a closed door session with more than a hundred women showing each other the results of their reconstruction surgeries. As Sue Friedman, founder and executive director of FORCE told me, “We used to do this in the bathroom. So, now we have a bigger room…”
Talk about efficient or one-stop shopping, this was THE place to be to learn a lot about the facts about heredity cancers for those at increased risk and the place to meet so many others there to do the same thing. And even though there were tearful moments, it was not a depressing or sad place. It was a place of empowerment and support!
I met mothers and daughters, sisters, husbands and wives. One young woman was so happy to be there, to be in a place where she could TALK about her gene mutation and what it meant to her. Her family won’t talk to her about the genetic mutation in their family; they think she is crazy for having her breasts removed; she didn’t think she had even had a card or phone call from them when she had the surgery. I met her on Thursday night at the welcoming reception and she couldn’t wait to share her story and hear from others.
I met a nurse practitioner who works in women’s health who is finishing up work on her doctorate to understand how women feel after they have make their decisions based on their genetic predisposition for cancer. I met an English professor, Amy Boesky, who has published a book, “What We Have,” her memoir about how she grew up with the threat of cancer hanging over her head. I met a genetic counselor who talked about her work and who was attending the conference for the first time – and on a Komen for the Cure scholarship.
I met physicians and other FORCE advocates who are frustrated and anxious about the future of the research and availability of PARP inhibitors in the U.S. and worldwide and another who was celebrating the recent legislation in Michigan requiring specific elements in their informed consent prior to genetic testing. I talked to women from Australia, Israel, the Netherlands, Germany and Latin America – all either at increased risk of hereditary cancers themselves or working with women who are at risk.
80% of the more than 500 attendees were attending for the first time.
There were exhibitors at the conference – providing information on topics from reconstructive techniques to clinical trials, selling products ranging from healthy cooking cookbooks to jewelry, to denim flip flops with the FORCE logo to tees and more. Our own Komen Central Florida Affiliate was there with our interactive educational game complete with big green spinning wheel – and the line was long at every break to participate to try to get the answer right and win a prize.
One reason I was there was to receive The Spirit of Empowerment Award for Advocacy that was being presented to Komen. These awards given by FORCE recognize the contributions of individuals and organizations that help empower, support and educate the hereditary breast and ovarian cancer community. I was honored to represent Susan G. Komen for the Cureand our work in advocacy, specifically as we collaborated with FORCE on important issues, including the passage of the EARLY Act, our response to USPSTF guideline changes and promoting PARP inhibitor research.
And, as often happens at meetings and conferences, I met people who are involved with Komen in many ways – in local Affiliates, as participants in Race or other events, involved with public policy locally, Grantees, volunteers , industry friends and corporate sponsors. It is rewarding and energizing meeting so many people who have been touched by Komen in so many ways.
And, as I was heading to the airport, there were predictions of big thunderstorms and there were huge, tall, big black clouds in the sky. I managed to get on as a standby passenger. On my way home a little earlier than expected, I was able to think about what I had learned and the people I had met, and to see how Komen’s support of this conference had helped FORCE act on their founding principle that no one should face hereditary cancer alone.
About the author
Nancy G. Brinker promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever. In 1982, that promise became Susan G. Komen and launched the global breast cancer movement. Today, Komen is the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure®, we have invested more than $1.9 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.