The Sandy Rollman Ovarian Cancer Foundation (SROCF) humbly began 16 years ago, on my living room floor, with the goal to give women a fighting chance against ovarian cancer. At the heart of the foundation is Sandy Rollman, a remarkable woman who lost her battle to ovarian cancer in 2000 at far too young an age. I was Sandy’s oncology nurse, and first came together with her sister, Adriana Way, to fight for Sandy when she couldn’t fight for herself any longer.
After Sandy passed away, we dreamt about honoring her by helping to support women and families like hers who were dealing with the realities of an ovarian cancer diagnosis. We started sitting on a living room floor with two people and one idea. We were both young, in our 20’s, knew nothing about running a nonprofit, and had no monetary backing. But, we were driven- driven by hearts filled with love and filled with pain. Emotions ran very high. We were both shattered in different ways. Adriana had lost her only sister and I had lost my patient, who became a dear friend, who I desperately wanted to save and couldn’t. I remember sitting on that floor, surrounded by papers (that at the time seemed to be written in a foreign language), and asking each other “are we really going to do this?” We were up against enormous odds and with no certain outcome. But, we both felt that if we helped just one person, it would be worth it. My home became our office. Our mailing list was close family and friends. And about a million times we asked each other “What have we gotten ourselves into?” We never imagined where we would be today.
Building a movement is tough but exciting. I believed our community needed this movement to further the cause. We built it by people working together. Watching it grow and seeing the impact of our work has been incredible. People derive hope from it, and from us.
When we first started, I discovered how few resources and support services there were available to women with the disease. From inception, we set up monthly meetings to make sure that all women with ovarian cancer had a place for support and to connect with other survivors. At our first meeting a woman admitted “I thought I was the only one.” The Sandy Rollman Ovarian Cancer Foundation works tirelessly to ensure that no woman with ovarian cancer ever feels alone. These women know that we’ll be with them, no matter what.
Today, the Sandy Rollman Ovarian Cancer Foundation works to unite the community together to promote awareness of ovarian cancer through education about the disease, research funding, and advocacy. Every year through fundraisers, the organization funds research to find a cure for ovarian cancer, a screening test for early detection, breakthrough treatments and improve the quality of life for those living with ovarian cancer. Last September, the SROCF reached an incredible landmark- granting over $3.5 million dollars to fund research! In 2015, the SROCF embarked on our most ambitious project to date; committing half a million dollars to help fund the Stand Up to Cancer Ovarian Cancer Dream Team. The Dream Team focuses on treatments for ovarian cancer patients today and prevention and early detection of the disease. This research grant is a big step, but an exciting one for the impact it will make on ovarian cancer prevention and early detection. It was a big leap to take as an organization. But, I have always been one to take that leap. I know that women with ovarian cancer depend on us to take the step forward and to do everything in our power to change its course. To me, the only thing that could have been lost was a chance not taken. That’s not to say that I didn’t have a few sleepless nights about this enormous commitment, because I did. But the potential benefits far outweighed the risk in my mind, and the results so far have been very exciting. Our commitment to research funding and the support we offer women and their families are what I’m most proud of, that even in the midst of all the sadness surrounding this disease, in some small way we’ve played a role in someone’s survival.
The most difficult and hardest part of doing this work is the loss. To be very honest, there are times that I feel gutted. And there are even a few times that I have felt like running away. Every loss is like losing a member of my own family, and is a punch in the gut that takes your breath away. And yet, I don’t run. Those losses drive me to work even harder. Since starting this, I have cried harder than I have ever cried. But, I’ve also laughed harder than I have ever laughed. As much as I give, I have received so much more in return.
I often think about the women who are alive today because of a treatment a researcher developed, and we had a hand in supporting. I think of the collaborations and the ideas that have resulted from working with others. I think of women who once felt isolated and alone, and now feel like they’ve found a home. I think about the difference being made because we dared to talk about our hopes and dreams while sitting on that floor, and the difference being made because we worked to build such a strong community. I think about all the doors we knocked on, being unafraid to knock them down. This journey has been beautiful, painful, spiritual and everything in between. I celebrate every story of survivorship, and I remember every friend I’ve lost. I remember them for what they stood for and for what they fought for. And they exist in every single decision that I make.
Over the years, people have often asked how I mustered the courage to start a fledgling nonprofit. How did I accept that risk? The truth is I didn’t really see it as a risk. To me, the real risk would be giving up a once-in-a-lifetime chance to follow my heart and my soul to something that would hopefully change my life and a lot of other people’s lives for the better. In the end, I decided the risk of missing such an opportunity was too great and it was one of the best decisions I’ve ever made.
I truly believe that anything is possible when you have the right people by your side. When you see the grit & grace of our community unite, it keeps you going. Sometimes, even the smallest of actions can lead to the biggest of breakthroughs. Every one of us has the power inside to do something good- to make a real difference. I encourage you to find that power inside of you and use it.
Robin Cohen is the CEO and Co-Founder of the Sandy Rollman Ovarian Cancer Foundation. She is a member of the Oncology Nursing Society, the Society of Gynecologic Nurse Oncologists, Sigma Theta Tau Honor Society and the Cambridge WHO’s WHO. She has been recognized as one of the 75 Greatest Living Philadelphians. She has served on the board of directors of the Ovarian Cancer National Alliance for the last 7 years and is now the Vice President of the Board of the Ovarian Cancer Research Fund Alliance. Robin recently joined the Board of World Ovarian Cancer Coalition.