Just after midnight on New Year’s Day 1999, I formalized a plan that I had consideredfor months. That day FORCE was born. I could write volumes on the many ways FORCE has impacted every aspect of my life, but this blog is about FORCE’s achievements and how the organization has helped people and families affected by HBOC.
Our 15-year efforts to unite, support, educate and improve lives has produced greater awareness, more research and better resources for the HBOC community, and has established FORCE as the community’s trusted leader. Last year was an unprecedented year for FORCE efforts, successes, and identification of new challenges.
- FORCE supported the American Civil Liberties Union successful lawsuit challenging Myriad Genetics’ BRCA gene patents and we support ongoing efforts to assure that other labs may offer testing for these mutations at reduced cost.
- FORCE’s recommendations were incorporated into expert guidelines, including those issued by the United States Preventive Services Task Force.
- Our efforts continue to make these guidelines more equitable and fair.
Awareness and Support
- Thanks to the combined impacts of Angelina Jolie’s announcement, Hollywood’s Decoding Annie Parker, and the Supreme Court overturning gene patents, media attention of HBOC reached an all-time high. Now more than ever, people need FORCE as a trusted resource of credible information.
- Regardless of geography, income or other factors, no one needs to face hereditary cancer alone. Our staff of dedicated employees works hard to keep the lights on, and continue to expand our programs to meet the needs of a growing community. More than 100 trained volunteers answer helpline calls and run meetings in 55 cities, providing support and connecting people to resources, expert care and others who live with HBOC.
- An unprecedented number of HBOC-specific intervention studies for cancer treatment and prevention opened in 2013.
- We continue working to overcome barriers we identified to HBOC-specific research.
2014 promises to be another landmark year for FORCE and the community we serve. Decoding Annie Parker will be released in theaters nationally. We expect 800 attendees for our 8th annual Joining FORCEs Conference in Philadelphia, and we will launch a clinical trials finder tool. We will also redouble our efforts to promote and enroll people into HBOC-specific research of detection, prevention, treatment, and quality-of-life. FORCE and the University of South Florida will expand our American BRCA Outcomes and Utilization of Testing (ABOUT) Network through a funding award by the Patient-Centered Outcomes Research Institute (PCORI). We will be looking for survivors and previvors who wish to help us shape HBOC research goals, participate in training, and volunteer for leadership roles in developing a hereditary cancer research agenda and plan.
Stay tuned for more updates throughout 2014.
From our family to yours, happy New Year!