Partner Member Profile: Ovarian Cancer Together

In November 2006, Kay Kerbyson was diagnosed with ovarian cancer. A young mother of twins, Kay lived with her family in the small town of Los Alamos, New Mexico. She had to travel 100 miles to Albuquerque for her treatments. When her cancer recurred in January 2008, Kay wanted to talk to other ovarian cancer survivors in her community. Friends passed on the name of another ovarian cancer survivor in Los Alamos, but Kay wasn’t sure how to contact the woman, or whether she was willing to talk about her experience.

Frustrated by the lack of local resources, Kay started Ovarian Cancer Together in 2008. “It was originally just a website where you could go and create a profile,” recalls Kay. The website included a map showing where survivors lived who were willing to connect with others. “You could get in touch with them and say ‘Hey, let’s get together.’”

As she got to know more survivors in the area, Kay felt there should be a support group nearby, “Not just one 100 miles away.” She started an informal group. “We didn’t have a facilitator,” recalls Kay. “It was just a place to make friends, have fun and laugh.” Ovarian Cancer Together slowly grew to include other nearby support groups, including one near Santa Fe.

In addition to connecting survivors, Ovarian Cancer Together raises awareness of ovarian cancer at health fairs and through a monthly column Kay writes for her local newspaper called “Life with Cancer.” Kay is especially passionate about reaching other young women with cancer. “I want to let them know there are other women like them,” she explains.

In 2010, Kay and her family moved to a small town in Washington state. “We were in exactly the same situation as in New Mexico,” she recalls. Today, a group of volunteers keep Ovarian Cancer Together running in New Mexico, while Kay has worked to replicate the same support groups, health fairs and newspaper columns in her new home.

The website remains a critical resource for women in both communities. “It’s very localized to the two particular states,” notes Kay. In addition to connecting survivors, the site lists local clinical trials and doctors in each area. There are private chat groups for women in New Mexico and Washington, and many women network through Ovarian Cancer Together’s Facebook page.

Kay first connected with the Ovarian Cancer National Alliance when a local Medicare provider denied coverage of the drug Avastin for women with ovarian cancer. The Alliance reached out to Kay to identify local women who might have been affected by denials of coverage. When she heard about the Partner Member program, Kay says: “It was a no brainer—this was exactly what I’ve been doing, but one step bigger. I love that I can talk to and work with other Partner Members, then feed that back to my people locally. Now they’re not just getting a local perspective but also a national one.”

As an ovarian cancer survivor with two young children, Kay’s personal mantra is “Make every day precious.” However, she also wants to make a difference for others—and by founding Ovarian Cancer Together, Kay has done just that.

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