The Ovarian Cancer National Alliance changed my understanding of life as a survivor of ovarian cancer. First, as a client, I learned about my disease through their education programs. Then I learned about empowerment, testifying on behalf of other women with the disease. Through their outreach efforts, we engaged the underserved and under-informed. We became the voice of patients to healthcare providers and policy makers, and made substantive change. This is a charity that affects every aspect of ovarian cancer - patients, clinicians, researchers, donors, caregivers, lawmakers and the public. Serving on their board is the most honorable role of my life.
The Ovarian Cancer National Alliance is an organization close to my heart as I lost my Mother to Ovarian Cancer over 10 years ago. The events that the OCNA puts on are top notch and reach so many surviors and family members that have been affected by this disease. All the events I've been to since volunteering the past few years have always been a fun and positive experience. Every detail has been perfect and all the events have had incredible turnouts. It's really important to me to know that my help can make a difference in someone's life and I'm proud to help the OCNA in any way I can.
OCNA is a non-profit umbrella organization that brings together cancer activists, women's health advocates, health care providers and researchers in the battle against ovarian cancer. OCNA's website, www.ovariancancer.org, provides access to names of Gynecologic Oncologists, up-to-date diagnosis, treatment and information about genetic influences as well as breaking news in the ovarian cancer field. OCNA's goal is to improve the survival rate of women diagnosed with ovarian cancer. We work with health professionals in training (in Medical, Nursing, Midwifery, Physician Assistant Schools) what to look and listen for when working with women so they may be diagnosed early if they have symptoms of ovarian cancer. EARLY DIAGNOSIS MEANS INCREASED SURVIVAL TIME. OCNA's signature program, Survivors Teaching Students, works toward earlier diagnosis through survivors who tell their stories to students who are just beginning to work with Gynecology patients. Usually, three of us share our stories of diagnosis, treatment and our lives now. We hope to prevent the delays that lead to more than 81% of us being diagnosed late-stage and to encourage what we found was helpful. How to give bad news, ensure that hope survives and where to get help if needed are among the contents of these personal stories. We put a face to a dreaded disease. We show that while ovarian cancer is the most lethal of gynecologic cancers, there are survivors who continue their lives. Results of each panel's presentation are determined by two surveys filled out by students before and after they have heard the speakers. Group facilitators now enter data from each presentation online at OCNA's website. An Electronic Data System allows us to collect survey results and quantitatively evaluate the effectiveness of the presentations. OCNA stands alone in its Survivors Teaching Students signature program. A physician now working in a NYC Medical School recently told a 3rd year student that he himself had never forgotten the STS presentations he had participated in years ago. You won't, either, he told her. OCNA reaches out to the newly diagnosed and to those of us who have survived and want an effective way to help. OCNA is the prime resource for women like me and our families who are dealing with ovarian cancer.
The Ovarian Cancer National Alliance is a well-organized, effective, and much-needed organization, as evidenced by studies that show that the majority of women and half of all doctors are unaware of the symptoms of ovarian cancer. In addition, ovarian cancer has traditionally been a stepchild when it comes to funding for cancer research. OCNA, founded little more than a decade ago, has made great strides toward educating the public and medical professionals about ovarian cancer; informing women with ovarian cancer about all aspects of their disease, including resources; and uniting these women and giving them a voice at the state and national levels.
I've been involved with the Ovarian Cancer National Alliance since it's first conference in 1998. The leadership training I received in the early years of the Alliance has helped me become a vocal advocate on a wide range of cancer issues. While the organization has grown in terms of the various activities it is involved in, the focus on women with ovarian cancer, their families and the future patients is kept in the forfront of the organization's aims.
Though I have not been personally touched by ovarian cancer, I have worked with the organization in a variety of fundraising and outreach capacities. The 12th Annual Ovarian Cancer National Alliance was an incredibly moving experience for me. The organization staff ran a tremendously informative and very special program. I was deeply touched by the stories from the many survivors whom I met and as a result, I have a renewed strength to continue to work with the organization.
While researching to understand ovarian cancer after being diagnosed in early 2007, I discovered "Survivors Teaching Students: Saving Women's Lives," the ovarian cancer educatiion program for medical students under the sponsorship of OCNA. As I am a living example of two things that have become my passion: early detection of ovarian cancer and timely referral of patients into the care of a gynecologic oncologist, I will share my story whenever the opportunity presents itself: as a guest speaker, facilitator, or writer for community outreach efforts. OCNA continues to support my education and commitment with attending their annual conferences the last two years in Washington, DC.; participating in Lobbying Congress on the last day of the conference. As well, they nominated me to participate this year as a Consumer Reviewer of the Department of Defense Congressionlly Directed Medical Scientific Research Panel for FY09 ovarian cancer program.
This organization has helped me immensely with information on ovarian cancer and becoming an advocate for the disease. I have attended 4 conferences held in Washington, DC and have gone to Capitol Hill on 2 of these occasions to speak with representatives regarding funding for ovarian cancer research and education. This organization also helped me become a member of the Survivors Teaching Students which enables us to go to medical schools and speak about our experiences with the disease to future doctors, nurses, and others in the health field. They also have an on-line support group that I am involved in daily to assist me and others with information and problems that come up with living with ovarian cancer.