The Hereditary Breast and Ovarian (HBOC) Society is a charitable, non-profit organization incorporated in 2002. The Society is governed by a Board of Directors and supported by an Advisory Council of professionals with expertise in medical, clinical and legal issues relevant to the work of the Society.
Who We Are
We are directly or indirectly affected by HBOC syndrome, bringing with us the skills and passion to make a difference for today and future generations.
Nicole Martel, Board President
Sayler Reins, Past President
Laurie Ganton, Secretary and Treasurer
Shauna Warwick, Director
Kristen Tetley, Director
Mary McDonald, CEO
Denise Okrainetz, Business Manager
What We Do
Our Mission: To represent, educate and support individuals, families and communities impacted by the hereditary breast and ovarian cancer (HBOC) syndrome.
How We Do It
Awareness: The public and even many of our medical professionals are unaware or misinformed with regard to HBOC syndrome. Even worse, up to 80% of HBOC syndrome carrier are not aware of their status, so can do nothing to save their lives. According to study that came out after Angelina Jolie-Pitt’s reveal, the public is now more aware that an hereditary cancer component exists, but still know very little about it. Lack of public awareness contributes to lack of emotional support for carriers and their tough choices. Confirmed HBOC syndrome carriers aren’t always aware of all of the issues that face them and other carriers. We are actively involved in mainstream media campaigns, social media and have and continue to be featured in various news media. Young HBOC recently spearheaded the Risky Genes Awareness Project.
Advocacy: There are so many issues facing those with HBOC syndrome. For example, current wait times for government-paid genetic testing and preventative surgery are very long. Some HBOC syndrome carriers are being diagnosed with cancer during the long wait. We are actively involved in lobbying efforts where required.
Services: An HBOC syndrome carrier’s needs can be complicated, multi-faceted and far-reaching. A wide array of supports and services are needed for the carrier and their family members who may also be carriers. Loved ones struggle too with fear of cancer, outcomes of chemotherapy and/or drastic risk reduction surgery or cancer diagnoses. Where existing services do exist, wait times can be long. We promote, support and help fund start-up and expansion of targeted services such as multi-disciplinary HBOC syndrome clinics.
Research: Funding opportunities have been very limited. As a result so is the research available to guide care and help HBOC syndrome carriers make life-saving decisions. The larger cancer funding organizations have not historically funded their hereditary component proportionately (5-15% of breast, prostate and ovarian cancer is estimated to be hereditary). Researchers are beginning to scratch the surface but there is such a long way to go. To date, body part removal surgery provide the only option to reduce cancer risk the most, and there are still no true targeted treatments for hereditary cancer. We strive to increase funding to ensure better options for generations to come.
Education: We educate individuals, families, their supporting medical community and the public. This includes but is not limited to an informational website, monthly bulletin, speaking engagements, various promotional materials and an annual conference.
Support: We seek out and connect those directly and indirectly affected by HBOC syndrome. We provide peer support and a variety of opportunities to get involved.
Why We Do It
We have lost grandparents, mothers, fathers, sisters, brothers, aunts, uncles, nephews, nieces, cousins and even our own children. We get the most cancer, at the youngest age, yet hereditary cancer services, resources and research receive the least funding.
Our Vision: We believe that those individuals and families impacted by the HBOC syndrome should have timely access to quality health information and services. We believe and respect that each individual has the right to choose their own path to well-being We believe in the value of support while respecting the privacy of individuals and their families affected by the HBOC syndrome.
Other organizations deal only with a part of the picture, i.e. just breast cancer, and often focus very little on their hereditary component. There are no other organizations in Canada that attempt to address all aspects facing those directly and indirectly affected by HBOC syndrome. There are far more HBOC syndrome carriers than we ever imagined and with or without risk-reduction options our journey never ends.
The earlier screening recommendations are very helpful to find and early cancer, but cannot prevent it. All cancer risk-reduction recommendations are drastic, creating additional problems such as fertility and body image issues. We want better alternatives for future generations.
Research has shown the subsequent generations are being diagnosed with cancer at an earlier age. We have no time to lose.
What You Can Do To Help
There are a variety of ways to support the HBOC Society and the cause. Most importantly, talk about hereditary cancer with your friends, family and co-workers. You may be surprised how many people have a history of cancer in their family, so you could help save someone’s life!
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