NormaLeah Ovarian Cancer Initiative
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Mission Statement
The NormaLeah Ovarian Cancer Initiative is a 501(c)3 organization with a mission to enrich lives through early detection education, patient support services and research funding for ovarian cancer -- the silent killer of women.
About This Cause
The NormaLeah Ovarian Cancer Initiative was established in 2008 as a 501(c)3 organization. Named after two sisters who died of ovarian cancer, our mission is to enrich lives through early detection education, patient support services and research funding for ovarian cancer – the silent killer of women. Currently, there is a great need to educate women and those who care for them about this disease because there are no screening or early detection tests. Our programs focus on creating a dialogue between women and their healthcare team, so this deadly disease can be diagnosed at an early stage when the survival rate is above 90%. Since the launch of our BEAT the BIG O Initiative in 2011, NormaLeah has distributed more than 500,000 free BEAT symptom cards to women worldwide. These cards reach women where they work and play and can be mounted on a mirror for top-of-mind awareness. Distributed through medical facilities, salons/spas, retail boutiques and at dozens of health fairs each year, the cards educate and empower women to know the subtle and easily-dismissed symptoms of the disease. During September, our awareness month, this message is used on TEALtag window clings -- a program popular with high-traffic, street-level businesses. We know of several women whose diagnoses were made as a direct result of these programs. The campaign was expanded in 2016 to include Sisterly Advice, a dynamic discussion about genetic inheritance and its relationship to gynecologic cancers. Attendees are empowered to understand the importance of familial cancer history and understand how to be vigilant self-advocates for their ovarian health. Participants assess their personal risks, learn about ovarian cancer symptoms and explore risk reduction strategies. They are encouraged to ask questions about their family history and health insurance coverage. These women are inspired to speak with their healthcare professionals about receiving the proper medical attention for the best outcome. Sessions are facilitated by NormaLeah's founder and CEO Jodie Kavensky, an engaging health educator and advocate for early detection, who shares a personal story of her own mother’s ovarian cancer journey. She reveals how her inheritance of a BRCA gene mutation, which she has passed along to her young daughter, has fueled her passion to help others beat this insidious disease. Each participant receives a packet of information about ovarian cancer and its relationship to other cancers. They are also given symptom cards to distribute to family and friends, and the knowledge to be mindfully aware of their own health. First presented in 2016, RULE OUT! Ovarian Cancer for Early Detection and Risk Reduction is a collaborative program with front-line healthcare providers that awards CME/CEU credits. Women are frequently misdiagnosed because ovarian cancer symptoms mimic many common, non-deadly diseases and too often the possibility of ovarian cancer is not considered. More than 75% of diagnoses are made at stages III/IV, when the 5-year survival rate is below 45%. This presentation includes survivor and physician testimonials, shares the most current diagnostic advancements and underscores the need to rule out the disease at an earlier stage and refer patients to gynecologic oncologic specialists. At the request of a family who established a memorial fund at NormaLeah in 2017, we developed our sisterSTRONG program which provides support, resources and referral services for ovarian cancer patients and survivors. It includes enrichment programs at the local level and a Survival Toolkit for the newly-diagnosed. Our girlpARTs project is a collaborative effort with local businesses, community leaders and artists. It uses the arts to raise awareness of ovarian cancer and the genetic relationship to breast cancer. Grants, corporate sponsorships and individual donations support all our life-saving programs. Our Founder/CEO oversees implementation of these core programs with the assistance of several contract employees and approximately 50 active “Sisterhood of the Teal Tiaras” volunteers. NormaLeah is committed to creating turn-key programs which can be easily implemented by any group of interested women in their community. Our educational materials are always distributed free of charge.