Joi Morris, author of Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer and HeritX co-founder, is the keynote speaker at this year’s Our Genes conference sponsored by the HBOC Society. The mission of the HBOC Society is to represent, educate and support individuals, families and communities impacted by the hereditary breast and ovarian cancer (HBOC) syndrome. The annual Our Genes Conference provides education, support and research updates critical to the needs of the HBOC community. For more information on attending the Our Genes Conference visit www.HBOCSociety.org.
The Our Genes Conference will also include a HeritX Prevention Advocacy Network (PAN) forum to allow all attendees to be directly involved in shaping the future of BRCA prevention research through the PAN.
What is the Prevention Advocacy Network?
The PAN is a community engagement platform that will ensure that prevention research focuses on a future preventive therapy that will meet the needs of the community – not only in terms of the level of risk reduction but also in terms of convenience and side effects. Today, surgery is the only option for preventing BRCA cancers. Like Angelina Jolie, many women choose this route, removing breasts and also ovaries and enduring the consequences – inability to breastfeed their children, loss of sensation, and surgical menopause among others. But BRCA families want their daughters to have better options. Men typically do not choose surgery to prevent prostate cancer and almost no one chooses preventive surgery for pancreatic cancer. Safe effective prevention that leaves people healthy and whole is desperately needed. Moreover, significant disparities exist, with African American and Hispanic communities facing an increased likelihood of negative health outcomes from BRCA mutations because they are four to five times less likely to be offered genetic testing and appropriate medical management for both treatment and prevention. Even those tested are less likely to opt for surgical prevention of breast and ovarian cancer due to communal norms that impact decision-making. Safe and effective prevention options other than surgery would have a dramatic impact on everyone, but especially in these underserved communities.
Developing new preventive options for BRCA cancers requires two communities coming together to create a better tomorrow. Families with BRCA mutations need to band together to advocate for and support research. Meanwhile, the research community needs to hear the voices of families and work to create a better future that meets the needs of these families. The HeritX Prevention Advocacy Network (PAN) is the bridge between these two worlds.
The PAN serves as a mechanism to gather and funnel patient input to the researchers dedicated to BRCA prevention research. Through the PAN, families have the opportunity to voice their dreams for a better future without surgery and can be sure that their needs and desires will be heard by researchers because HeritX will incorporate these community needs into its research agenda and scientific conferences.
Please join us, your voice matters!