Ovar’Coming Together has the distinction of being both a Partner Member and a founding member of the Ovarian Cancer National Alliance. Based in Indianapolis, the organization was founded in 1995 by three women who were going through chemotherapy at the same time. “Kai Binford, Pam Faerber and Nancy Hines created Ovar’Coming Together when they realized that women had nowhere to go for information about ovarian cancer,” says Executive Director Robin Jackson. Not long afterward, they became founding mothers of the Alliance, extending their local efforts at a national level.
Today, Ovar’Coming Together focuses on providing support and education for survivors and caregivers in Indiana. Newly diagnosed women are given H.O.P.E. packets—an acronym for Helping Ovarian Patients Endure—which include “all the resources a woman might need on her journey,” Robin says. “We give women a list of gynecologic oncologists in Indiana, resource listings, symptom cards—even wig catalogs.” The group also offers a lending library of books about all aspects of cancer; the catalog will soon be available to browse online for women who live outside Indianapolis. They can then pick up the books at the Indianapolis office or have them mailed anywhere in the state.
In addition to resources, Ovar’Coming Together assists survivors with two support groups, including one called the “Lunch Bunch.” “It’s a lighter option—more of a social meeting than a traditional support group,” explains Robin. The organization uses its network to connect women having similar experiences with ovarian cancer, like young survivors or women experiencing side effects from their treatment. By talking to others in comparable situations, women are able to find comfort and practical solutions to problems they may be facing.
Quarterly educational meetings provide resources for survivors and caregivers. Topics for presentations are drawn from a twice-yearly survey sent to survivors, and have included clinical trials, genetic risks associated with ovarian cancer, nutrition and survivorship. In the next year, Robin hopes to increase the number of educational speakers and host sessions every two months.
As well as working with survivors, Ovar’Coming Together educates the community about ovarian cancer through a speakers’ bureau and participation in local health fairs and workshops. The impact of the speakers’ bureau can be seen through a quiz given out before and after each presentation: “People go from getting three out of fourteen answers to knowing all of them,” says Robin. Ovar’Coming Together trains volunteers to deliver these presentations.
Two projects will expand educational outreach to the medical community in Indiana next year. Ovar’Coming Together is working with the Alliance to start the Survivors Teaching Students: Saving Women’s Lives® program in local medical and nursing schools. Through a partnership with Indiana University Hospital, the organization is also developing a continuing medical education program on ovarian cancer for frontline physicians. Both projects will be up and running in the first half of 2012.
True to its origins, Ovar’Coming Together continues to work closely with the Alliance. The two groups are working together—along with other Partner Members in the region—to host a regional conference in March 2012.
“Being a Partner Member gives us credibility and emphasizes that there’s a national effort,” says Robin. “But the Alliance also recognizes that each state is different. As a Partner Member, we have the freedom to do what works best in our community, rather than having to use a cookie cutter approach.” As a result, Ovar’Coming Together can rely on the Alliance as a national resource, but is still able to provide the specific services needed by women in Indiana.