by Sue Friedman
Happy 20th anniversary to FORCE and our community!
I founded FORCE on New Year’s Eve, 1998, just a few strokes before midnight. It had been a year of great personal challenge and change for me. I was 35, had just completed treatment for recurrent breast cancer, learned I had a BRCA2 mutation, and despite wanting another child, I had my ovaries and tubes removed just seven months prior–a decision I made reluctantly. Newly menopausal, I spent many late nights with insomnia, browsing cancer survivor websites and posting on message boards. I soon recognized that these forums were not enough. There was a great unmet need for an organization that addressed the unique issues faced by ALL people with inherited mutations—those who had been diagnosed with cancer and those who had not. On New Year’s Eve, while my toddler slept and my husband was alone on the couch watching the ball drop in Times Square, I started the new organization, which became FORCE.
Caught up in the inspiration and passion of our cause, it feels as though the last 20 years have passed so quickly. Directing FORCE and our programs remains an amazing and uplifting experience. But it’s so easy to forget how far we’ve come and all the effort that got us where we are now. Writing a recent grant proposal took me back to old Joining FORCEs newsletters and “Thoughts from FORCE” blog posts—archives that provide a record of our organization’s early accomplishments and challenges. In honor of our 20th birthday, over the next year through this blog, we will share insights and progress from the last 20 years and a perspective on how we plan to shape the future of hereditary cancer in the years to come. In the meantime, here are some highlights and milestones we have reached along the way.
- 2000: Our blog, Previvor: Past, Present, & Future, outlined the birth and growth of the Previvor movement in 2000, from the first “I need a label” post that started it all.
- 2003: With help from researchers at the University of Pennsylvania, we launched our toll-free helpline. The beginning of our support efforts, our helpline began with fewer than 30 volunteers. In 2016 we launched our personalized Peer Navigation Program. Since then we have matched 1,500 users (by age, mutation, cancer type/risk, and situation) to compassionate, trained volunteers who provide support and a personalized resource guide.
- 2004 and beyond: We joined forces with the Coalition for Genetic Fairness—a collaboration of over 500 organizations that successfully lobbied for the passage of the Genetic Information Nondiscrimination Act (GINA), (see page 7 for the article), which prohibits genetic discrimination by health plans and employers. GINA (signed into law in 2008) was our first advocacy victory, but it is not our last. You can follow our latest efforts on the advocacy portion of our website.
- Fall 2005: We introduced our community to early research on new, promising agents known as PARP inhibitors. This marked the beginning of our continuous efforts to overcome barriers and help recruit patients from our community into relevant clinical trials enrolling patients with inherited mutations. Thirteen years later, four PARP inhibitors now have FDA approval for treating breast and ovarian cancer. FORCE fills an important research need by helping to match members of our community to hereditary cancer clinical trials and research studies. We are so very proud to have played an active role in patient enrollment for every PARP inhibitor clinical trial that has led to these FDA approvals. Watch for our 2019 updates on prevention, treatment, and quality of life studies enrolling people with inherited mutations.
- 2006: We held our first Joining FORCEs Against Hereditary Cancer Conference at the Moffitt Cancer Center in Tampa, Florida. At the time, we considered it to be quite an accomplishment to attract 200 participants. This past October, we hosted over 700 participants at our 11th annual conference, making it the largest annual gathering of the hereditary cancer community. Stay tuned for online highlights from the conference.
- 2015: With funding from the Centers for Disease Control, we launched our eXamining the Relevance of Articles for Young Survivors (XRAYS) program as a credible and trusted source for information on breast cancer research in the media. Since then, we have published over 150 reviews. In the coming year, we will expand this program to focus on metastatic breast, ovarian, pancreatic, and prostate cancer. Look for our relaunch in 2019.
Over the last 20 years, your perspectives and voices have inspired me and reinforced my resolve. From the uplifting to the unexpected, your stories have been the wind in my sails. As I think about the future, it’s easy to daydream about how the work we are accomplishing today will lead to a time in the future when the hereditary cancer community will no longer have unmet needs. Until that day, I wish you all a Happy, Healthy New Year and a Happy Anniversary to FORCE as we plan and schedule our 2019 efforts.
Be Empowered and Be Well!Tags: ATM, brca, breast cancer advocacy, cancer advocacy, cancer risk, facing our risk, genetic testing, hereditary cancer, ovarian cancer advocacy, PALB2, previvor