The National Ovarian Cancer Coalition (NOCC) has come a long way since its grassroots beginnings in 1991, but it hasn’t lost its boots-on-the-ground approach when raising awareness of ovarian cancer in communities across the country.
After its formation by ovarian cancer advocates and survivors in Boca Raton, Fla., the NOCC was incorporated as the country’s first national organization providing awareness and education about ovarian cancer just four years later in 1995.
Since then, the 501(c)(3) group has expanded to 16 chapters nationwide. It has designated September as “National Ovarian Cancer Awareness Month” and fought to increase government funding for ovarian cancer research from $10 million to $20 million per year. The organization has many awards under its belt as well in recognition of various other charitable and educational efforts. Even with this long list of impressive achievements, though, the nonprofit aims to not forget its community roots.
“Even though we’ve been around for over 25 years, we’re still very grassroots in many ways,” says Karen Young, one of the two chapter managers for Illinois. “We’re still building upon small starts.”
Sandra (“Sandy”) Cord, the other Illinois chapter manager, echoes this sentiment. “We are very hands-on with educating our community and helping our survivors,” she says. “We have survivors helping other survivors, and it’s a very personal touch.”
While Young and Cord have not specifically experienced ovarian cancer firsthand, Young aided in caregiving throughout her mother’s experience with colon cancer – which shares a link with ovarian cancer through the presence of an inherited mutation in certain genes that increases the familial risk of ovarian cancer – and resonated with cancer organizations through that experience. As for Cord, she is a 14-year breast cancer survivor. Her close friend battled ovarian cancer and is actually the one who introduced her to the NOCC.
“It really hit home for me,” Cord says. “I’m all about early awareness.”
Early awareness is one of the NOCC’s four pillars, and it’s an important one. Ovarian cancer is not a common disease, but it is the deadliest of the gynecologic cancers and often referred to as the “silent killer” due to minimal pronounced symptoms in the early stages compounded with lack of screening tests. According to the American Cancer Society, a woman’s 5-year survival rate for ovarian cancer is extremely high (>90 percent) when the disease is detected early on and has remained localized. That rate drops to less than 50 percent when the cancer has metastasized. According to the NOCC, nearly 70 percent of women are diagnosed in advanced stages, making early awareness all the more urgent.
“We have 150 volunteers throughout the year that help us raise awareness in one way or another,” says Cord. “We talk to people one-on-one in communities. If someone tells you, ‘This is important because…,’ it makes a bigger impression than just hearing about [ovarian cancer] offhand.” NOCC volunteers take the time to speak with people, ensuring they understand the information and its importance. They also provide accessible educational materials, whether it’s at small outings, large-scale events or online.
Such community events make up another one of the NOCC’s four pillars. With the COVID-19 virus, the NOCC has had to improvise like most other organizations. Every year, each chapter has its signature event and a secondary event, and the 2020 pandemic has caused all chapters to lose those in-person gatherings. But the NOCC refused to let down their community of advocates and survivors.
“That’s our life,” Young begins. “We plan and plan to cancel – “
“And then plan some more,” Cord finishes.
NOCC chapters came together virtually on Sept. 26 for the organization’s Together in Teal National Broadcast Celebration, aptly titled “No Boundaries,” in order to sustain the communal essence that is so vital to the nonprofit’s work. Participants were encouraged to kick off the day with an activity of their choosing (a run, a stroll, a bike ride) and then gather virtually with family, friends and supporters for the broadcast.
The next event the NOCC hopes to hold in April 2021 is a survivor event, “Rejuvenate.” Partnering with Cancer Treatment Centers of America, the event will feature a prestigious panel of doctors talking about PARP inhibitors – drugs that have shown to stop cancerous cells from repairing chemotherapy damage while sparing healthy cells. The third and fourth pillars of the NOCC are quality of life and research, which will be combined in this event.
“We’ll have breakout sessions, yoga, meditation,” Young says. “But we want that panel so doctors can engage women in the conversation.” According to Young, because there is no early detection test and there hasn’t been major advancement in treatment over the past couple of decades for ovarian cancer, maintenance therapies are the best thing out there right now. They can extend a woman’s life and improve the quality of it. The NOCC not only wants women to know this is a legitimate option in treatment but also hopes to offer a safe space for women to share questions and concerns.
“We really do go the extra mile to be there for [survivors],” says Young. “This is such a devastating disease, […] and being able to see some bright light at the end of the tunnel – we’re really like a family weathering through everything together.”
To learn more about the NOCC’s initiatives, events and resources, visit ovarian.org.