NOTE: Since its discovery in 1995, this type of hereditary cancer has changed from one type of cancer, caused by mutations in only one gene to several types of cancer, caused by mutations in any of many different genes. As a result, all labels used to describe this syndrome, such as ''breast cancer gene'', ''BRCA'', ''hereditary breast and ovarian cancer'' and ''HBOC'' tell only part of the story, leaving out well over half of those who are affected. To better serve our patient group, we are in the process of changing our name and updating all resources to reflect the fully inclusive and future forward RISKY GENES™ brand. We ask for your patience during this process.
If we don't do something, who will?
Risky Genes™ Awareness Program
Although discovered twenty-five years ago, prior to 2013 hereditary cancer was virtually unknown, until Angelina Jolie made headlines with her BRCA1 mutation and prophylactic surgeries. However, the resulting media storm rarely talked about the related types of cancer or genes other than BRCA1 and drastically downplayed the incidence. In the years since, hereditary cancer continued to be downplayed and misunderstood, even as patient group numbers grew to the staggering proportions we see today. At least 1.3 million Canadians are now estimated to carry risky genes, of which at least 90% remain unaware. The number of affected people is expected to continue to increase because researchers have yet to fully explain this type of hereditary cancer. Through the years since discovery, thousands upon thousands have lost their lives due to inaction on the part of large cancer organizations and governments, especially in the area of public awareness. Due to the nature of hereditary cancer, a disproportionate number of those lost are young. Making this issue even more critical, subsequent generations have been shown to develop hereditary cancer even earlier than in previous generations.
There is no more time to lose. The widespread lack of awareness that has been allowed to continue through the years is a huge barrier to care on its own, but has also created many other monumental barriers to care, which include but are not limited to: lack of a cohesive patient group identity; fragmented, outdated and sparse resources; lack of mobilized patient groups for advocacy purposes, and last but most important; a drastic lack of funding.
Until the patient group can be seen as a collective, rather than fragmented into pieces that are easily downplayed, there can be no real success addressing the other barriers facing this patient group. So, we developed our own RISKY GENES™ brand to satisfy the need for a unique and future forward identity and the RISKY GENES™ AWARENESS PROGRAM, with the following aims:
To search out prospective and confirmed risky gene carriers to provide them with the tools required to make informed health decisions.
To provide a framework for risky gene carriers to become connected to each other and involved in their own cause.
To garner public support for new and existing programs specifically targeted to hereditary cancer.
Foundational messaging has been established and incorporated into elements strategically designed to peak viewers’ curiosity with the question, ‘DO YOU HAVE RISKY GENES?’, which directs users to a central website that will connect all the dots regardless of sex, cancer type, gene involved or point in their journey. Below, is the first commercial in history specifically addressing this type of hereditary cancer, which has aired in a test market successfully.
Researchers are constantly learning more, so information becomes outdated quickly. We need to update this commercial, the central website and create new graphic elements. Then, distribute them to the largest population possible to make sure we reach as many prospective and confirmed risky gene carriers as possible. Only a public awareness program can do this, and it will reach medical professionals and the general public at the same time, increasing knowledge and support for this cause. This may seem like a lofty goal but it is possible, with a little help from our friends.