cole Martel, President
Sayler Reins, Past President
Elisa Warwick-Markowski, Treasurer
Kristen Penick, Director
Vonnie Zupan, Director
Daryl Mack, Director
Only those who have been there can fully understand the journey that is fraught with trauma and loss for someone who has an inherited HBOC syndrome mutation in their family. Ours remains the only organization in Canada that attempts to connect and serve this vast and unique group at any point in their journey, regardless of mutation carried or cancer involved. We are passionate about making a difference for today and ensuring future generations have better prevention choices, so they don't have to make the same tough choices we have had to in order to live full, healthy lives.
Nothing can make your own journey seem less daunting than helping others in the same situation. There are so many ways to get involved, ranging from simply leaving us your name as a supporter to volunteering for events or joining a working committee.If we don't support our own cause, who will?
ABOUT THE SOCIETY
mission To represent, educate and support individuals, families and communites affected by HBOC syndrome
Education: Hereditary cancer is a new science. So, the landscape is constantly changing. We educate individuals, families, their supporting medical community and the public in a variety of ways, including an annual educational conference, informational websites, email bulletins, social media, speaking engagements and various printed materials.
Support: A carrier's journey is often long and traumatic. It may have started as a child, experiencing the illness or death of a parent or close family member. There is fear and pain associated with genetic testing, screening and prevention options. There are additional medical issues caused by chemoprevention and preventative surgeries. There can be body image issues, relationship and sexuality issues and loss of fertility. Unaffected family members may suffer survivor's guilt or be experiencing the stress of being a caregiver. We provide a soft place to fall for those both directly and indirectly affected by providing individual and group peer support connections. We also provide ways to become involved through social activities, committees and volunteerism.
Advocacy:There are so many issues facing those with HBOC syndrome. We work behind the scenes with government and health officials to promote and support medical services, lend our stories and time to encourage public support for existing programs and participate in many other ways to address individual and group concerns.
Medical Services: An individual carrier's needs are often complicated, multi-faceted and far-reaching. Supports and services may also be needed for struggling family members including children. We provide financial support for new and existing medical and psychological services.
Financial Programs: Due to the nature of hereditary cancer, a disproportionate number of women in their 20's and 30's are diagnosed with cancer or endure drastic, life-saving surgeries. They rarely have insurance to cover lost wages and many are supporting young families. We provide financial programs to help offset the cost of out-of-pocket medical and personal expenses.
Research: This type of hereditary cancer is extremely complicated because it involves a variety of cancers and many risky genes. Because the science is new and a research cycle is typically 20 years, researchers are only beginning to scratch the surface; there is such a long way to go. To date, drastic body part removal surgery remains the most effective way to reduce cancer risk and there are few targeted treatments for hereditary cancer. Governments and larger cancer organizations tend to support research for the larger, spontaneous cancer group, leaving little left for those who need it the most. We strive to increase funding for this much under-served cause through public awareness, grants and corporate partnerships.
VISION That those impacted should have readily available access to quality health information and services
Awareness:The public, medical professionals and even carriers themselves remain unaware or misinformed with regard to the danger, incidence and issues surrounding HBOC syndrome. Even worse, most carriers are not yet aware of their genetic status, so can't take advantage of the medical recommendations in place that provide earlier screening and cancer prevention options. Lack of awareness translates into lack of funding for this cause and contributes to lack of emotional support for those personally affected and the tough choices they are faced with. We are actively involved in media awareness campaigns, speaking engagements, social media and various news media. Our young members recently spearheaded the Risky Genes Awareness Project, out of which two television commercials were produced.
HISTORY Incorporated in 2002, after the founder searched for information and support after prevention surgery and found none