When Lydia Greene Ross passed away after a courageous 3-year battle with uterine cancer, her daughter, Carin Ross Johnson, knew something had to be done to make sure that what happened to her mother didn’t happen to anyone else. At the time Lydia was diagnosed, very little awareness and visibility about gynecologic cancer existed. Carin knew this had to change. From this idea, Lydia’s Legacy was formed on Mother’s Day in 2011, as a non-profit dedicated to raising awareness, funding research, and finding a cure for gynecologic cancer.
Lydia’s Legacy is entirely volunteer-run, made up of both advocates and survivors, and works to raise awareness of gynecologic cancer and support survivors in the Charlotte, North Carolina and Miami, Florida communities. Throughout the year, the group hosts many events and activities to spread awareness and educate the community about gynecologic cancer. One main event is a screening of the documentary, No Evidence of Disease, complete with a panel made up of doctors and survivors. Lydia’s Legacy also participates in several events to help raise funds for gynecologic cancer research, including their annual Teal Tea Party.
As well as raising awareness in the community, Lydia’s Legacy works to support women who are diagnosed with gynecologic cancers by providing Support Kits—bags filled with samplings of different items for newly diagnosed gynecologic cancer patients, to help them through their treatment and recovery. These items often include ginger candies to help with nausea, herbal tea, puzzles that can be used during long doctor visits, journals, and lip balm. Also included in the kits are important educational materials on financial support and information on gynecologic cancer. These kits are given out annually at Doctor’s Hospital in Miami. Since the program began back in 2013, nearly 250 kits have been given out, with 100-200 kits going out each year!
On the educational front, Lydia’s Legacy is also an active participant in the Survivors Teaching Students: Saving Women’s Lives ® Program (STS), facilitated through the Ovarian Cancer National Alliance. This program brings ovarian cancer survivors into medical, nursing, and physician’s assistant classrooms, where they present their unique stories along with facts about the disease to educate the future healthcare providers. Volunteers present year round at the Levine Cancer Institute in Charlotte and are looking to start up the STS program at Wingate University’s physician assistant studies program.
One major project of Lydia’s Legacy is their creation of educational awareness materials, including fact sheets and a 5×7 infographic card, which provides an overview of gynecologic cancer. The educational materials are a passed out throughout the community at health fairs and other health-focused events. These resources prove to be very beneficial for all women, whether they are unfamiliar with gynecologic cancer, are newly diagnosed or are survivors.
As they near their five year anniversary, Lydia’s Legacy continues to grow and reach more Charlotte and Miami residents through education and visibility about gynecologic cancer.