Of the more than 1 million Canadians estimated to carry RISKY GENES up to 80% are still unaware.
Nothing can make your own journey seem less daunting than by helping others. There are so many ways to get involved but one of the most important is to support the RISKY GENES AWARENESS PROGRAM. We believe this to be the only program of its kind, with the primary purpose of actively seeking out persons who do not yet know they are affected, to ensure they have
the opportunity to make informed health decisions that could save their lives.
Education: This type of hereditary cancer is a relatively new science, having been first discovered in 1995. This means the landscape is constantly changing. We educate individuals, families, their supporting medical community and the public in a variety of ways, including educational conferences, informational websites, email bulletins, social media, speaking engagements and various printed materials.
Specialized 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 targeted to hereditary cancer previvors and survivors..
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 disability 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 cancer types and many gene mutations cause it. Because the science is new and a research cycle is typically 20 years, researchers are only beginning to scratch the surface, leaving a very long way to go. To date, drastic body part removal surgery remains the gold standard for reducing breast and ovarian cancer risk and there are few targeted treatments for our aggressive hereditary cancers. 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 research funding through our advocacy efforts, corporate partnerships and public pleas.
VISION Those impacted should have readily available access to quality health information and services
Awareness:The public, medical professionals and even carriers themselves remain largely unaware or misinformed with regard to the danger, true incidence and issues surrounding HBOC syndrome. Worse, most carriers remain unaware of their own genetic status, so can't take advantage of the early cancer screening and prevention recommendations available to them. We are actively involved in media awareness campaigns, speaking engagements, social media and various news media. Our young members spearheaded theRisky Genes Awareness Program, out of which television commercials were produced. Please help us promote awareness by sharing the ad to the right on your social media.
Fundraising: The pervasive lack of awareness translates into a marked lack of funding for this cause, which contributes to the widespread lack of services, resources, research and emotional support for those affected. We promote fundraising efforts for those purposes.
HISTORY Incorporated in 2002, after the founder searched for information and support and found none
Support: A carrier's journey is often long and traumatic. It may have started as a child, through 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 side-effects caused by chemoprevention and preventative surgeries. There may be body image issues, relationship and sexuality issues and/or 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 peer support connections. We also provide ways to meet others through social activities and volunteerism.
Only those who have been there can fully understand the journey fraught with trauma and loss for someone who has risky genes in their family. Ours remains the only organization in Canada with a broad mission to help all carriers, which includes seeking out those who are unaware of their elevated cancer risk, estimated to be 80% of the more than 1 million Canadian risky gene carriers. These numbers could grow even higher, based on new research that is prompting calls for updated genetic testing criteria because it shows half of those with hereditary breast cancer have no cancer history at all. Add to this the fact that additional HBOC syndrome genes are constantly being discovered and to make our job even more urgent, research also reports hereditary cancer is diagnosed at younger ages in subsequent generations by up to a decade, which is clearly evidenced in my family.
We are the only population with the ability to prevent cancer, given we are aware of our situation and receive the recommended medical care. Yet, despite the larger cancer organizations, health care systems and governments being aware of hereditary cancer for over twenty years, it continues to be grossly downplayed and under-funded. Continuing to turn a blind eye will not make this problem go away. We have no time to lose.
Mary McDonald, CEO
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 specialized medical services, lend our stories and time to encourage emotional and financial support for existing programs and participate in other ways to address individual and group concerns.
ABOUT THE SOCIETY
mission To represent, educate and support individuals, families and communites affected by HBOC syndrome