Generations of Hope Forum in South Florida
HeritX started 2018 with events in Los Angeles and South Florida, including a Prevention Advocacy Network (“PAN”) Forum, Generations of Hope in South Florida. Generations of Hope included informative and inspiring presentations by Dr. Lauren Carcas, a medical oncologist at the Miami Cancer Institute and Dr. Karen Hurley, a clinical psychologist at the Cleveland Clinic who specialized in helping patients and families with hereditary cancer.
Through these PAN forums, HeritX is building a community of advocates to demand that the research community focus on preventing BRCA cancers before a cancer diagnosis. Bringing the voices and priority needs of those affected by inherited cancers and BRCA mutations to the medical research community is a key component of HeritX’s work. PAN forums allow multiple points of view from the community to be considered and incorporated into the HeritX’s R & D process. This input informs the way HeritX guides research. Generations of Hope provided an opportunity for the South Florida inherited cancer community to discuss and explore many aspects of current and future options for BRCA mutation carriers.
“This forum and discussion was wonderful and a breath of fresh air. As a two-time breast cancer survivor, I really applaud the cutting edge approach to prevent cancer rather than treat it.”
~PAN Forum participant in Florida.
The program started with a video about HeritX. This video presented the HeritX Roadmap for Prevention and the origins of the HeritX initiative to prevent inherited cancers. HeritX co-founder Joi Morris opened the day by presenting the background on why HeritX was founded, its mission and what medical research it is funding.
Presentation s by Dr. Lauren Carcas and Dr. Karen Hurley were a highlight of the day
Dr. Lauren Carcas is a medical oncologist at the Miami Cancer Institute who specializes in breast cancer and counseling families at genetic risk for cancer. She presented an overview of the current surgical and non-surgical options for preventing cancers in BRCA mutation carriers. She outlined the surgical options—oophorectomy and bilateral mastectomy and the lack of preventive surgical options for the other cancer types with high correlation of occurrence in BRCA mutation carriers. Dr. Carcas also discussed surveillance and medical preventive options including tamoxifen. Participants had numerous questions for Dr. Carcas and found the information she shared very helpful in clarifying their own situations.
Dr. Karen Hurley of the Cleveland Clinic is a clinical psychologist who focuses on hereditary cancer risk. We were very lucky to get her to travel for this event and her discussion was indeed a highlight of the day. She spoke on the quality of life issues, resilience and creating hope for those survivors and those with BRCA mutations. This set the stage for discussing what participants would want in the future and how they would respond to possible alternative prevention options. The last hour of the afternoon was spent in a facilitated discussion designed to garner community input into HeritX’s work.