by Jaime Berman Matyas | September 3, 2013 | Lifestyle
Jaime Berman Matyas (LEFT) became involved in the fight against ovarian cancer when she learned that a friend, Carey Fitzmaurice, had the disease.
Matyas at the 2011 Ovarian Cancer National Alliance conference with Olympic gymnast Shannon Miller (SECOND FROM LEFT), the keynote speaker and an ovarian cancer survivor, and Matyas's daughters.
Alliance members team up in teal.
The teal ovarian cancer ribbon.
Whenever I walk into an event dedicated to ovarian cancer, I see a sea of teal. Teal is the color of ovarian cancer awareness, and the women and men affected by this disease wear it proudly. For us, teal—and the cause it represents—is deeply personal.
Teal became personal to me in 2006 when my husband’s childhood friend Carey Fitzmaurice was diagnosed with ovarian cancer at age 37. Her two sons are the same age as my daughters, and her struggle hit home. I began to learn more about this disease, which is one of the deadliest cancers for women. This year, more than 22,000 women in the US will hear the words “You have ovarian cancer.” Tragically, one in four of them will lose her life within a year of her diagnosis.
One of the main reasons that ovarian cancer is so deadly is that there is no reliable early detection test. Unlike breast or cervical cancer, we have no mammogram or Pap test to tell women they may be sick. We urge women to learn about the risk factors of ovarian cancer, as well as the subtle symptoms. Women who experience bloating, pelvic pain, feeling full quickly, or urinary symptoms for 12 days in a given month may want to see a doctor for further testing.
I learned about the Ovarian Cancer National Alliance when our friend invited my husband and me to the organization’s annual fundraiser, Turn Up the Heat, in Washington. By day, I’m the executive vice president and chief operating officer of the National Wildlife Federation, and I joined the alliance’s board of directors in 2009. I have been so proud to take a leading role in raising awareness of ovarian cancer, both in our nation’s capital and around the country.
The alliance is a powerful voice for everyone touched by ovarian cancer. We connect survivors, women at risk, caregivers, and healthcare providers with the information and resources they need. We ensure that ovarian cancer is a priority for lawmakers and agencies in Washington and throughout the country, and we hold an annual advocacy day each year on Capitol Hill. We help our community raise their voices on behalf of every life that has been affected by this disease, and we encourage grassroots action on issues such as federal funding of ovarian cancer research.
To help support the mission, the alliance has 70 partner member organizations across the country that help us expand and enhance research funding, provide education, and increase awareness about ovarian cancer.
When the alliance was founded in 1997, doctors and medical textbooks insisted that there were no symptoms of ovarian cancer. We helped coordinate the first survey of survivors, which inspired the first published research on ovarian cancer symptoms, now widely accepted by the medical community. This research is also used to educate thousands of future doctors, nurses, and physician assistants about the signs and symptoms through our acclaimed Survivors Teaching Students: Saving Women’s Lives program.
Our voice has also been critical in securing federal funds for research and education. We are the only group working on Capitol Hill to ensure that Congress understands the impact of ovarian cancer and continues to appropriate funds for these initiatives. One example is the Department of Defense’s Ovarian Cancer Research Program, an innovative research scheme that has led to important discoveries, including a compound that potentially inhibits a form of ovarian cancer that makes up 40 percent of ovarian cancer tumors. Thanks to our efforts, legislators have set aside $196 million for this program over the past 15 years. We were also instrumental in the passage and reauthorization of Johanna’s Law: The Gynecologic Cancer Education and Awareness Act.
The alliance’s education, policy, and support programs all come together at our annual conference. The most recent conference—our 16th—took place here in Washington this July. We heard from some of the top researchers about new advances in treatment, especially in the fields of personalized medicine and clinical trials. For instance, Dr. Robert L. Coleman of the University of Texas spoke about new surgical approaches to ovarian cancer and the most recent research on immunotherapy. Survivors attended sessions on “Living Your Best with Cancer” and “Cancer on the Job.” Our annual Hill Day concluded the meeting: More than 170 survivors and supporters visited their members of Congress to talk about why ovarian cancer research matters so much to our community.
Throughout the conference, we talked about why teal is personal to us. My connection with this symbolic color began because of one friend, who is still battling ovarian cancer and, more recently, breast cancer. But in the past four years, I have met women of all ages who are battling this disease. Their courage inspires me to do all I can to share their stories and amplify their voices. Through my work with the alliance, I am trying to do my small part for the thousands of women and men, their children, parents, sisters, and brothers whose lives have been forever changed by this disease.
There is so much we still need to learn about ovarian cancer, including the development of an early detection test and better treatments. Having witnessed the strength and commitment of our community, I have no doubt we will reach those goals.
photography by stephen voss; thad allender (ribbon); shealah craighead (miller); duane stork photography (ocna 2009)