Partner Member Profile: Small Cell Ovarian Cancer Foundation

Posted:08/26/13

The Petersen family was inspired to educate the world about small cell ovarian cancer while their daughter and sister Stephanie was undergoing treatment for the disease. “The first thing they said to us was, ‘Don’t look on the internet—you won’t find anything about small cell ovarian cancer,’ ” recalls Maren Petersen. Discouraged by the lack of information, Stephanie vowed that when she got better, she would spend her life helping others fight the disease.

Although Stephanie “faced cancer with incredible grace and strength and determination,” she ultimately lost her life to this rare subtype of ovarian cancer. Maren says, “We wanted to carry on the work she wasn’t able to do herself.” Maren and her husband Ron, along with their son Greg, founded the Small Cell Ovarian Cancer Foundation to make information about small cell ovarian cancer more easily accessible to the public, especially young women.

The Small Cell Ovarian Cancer Foundation has a three-fold mission: 1) to raise awareness of the symptoms of ovarian cancer (which are the same for small cell); 2) to make information about small cell ovarian cancer available to future patients and their families; and 3) to provide financial support for research into small cell ovarian cancer.

One of the primary tools the Petersens use to raise awareness are bookmarks that list the symptoms of ovarian cancer and some facts about small cell, including the fact that the median age of diagnosis is just 24. “Young women in particular are not thinking ovarian cancer if they have symptoms. We want to make sure that they realize this is a possibility for them,” says Maren. The bookmarks are distributed at colleges, universities and medical centers in all 50 states, Canada, England, New Zealand and Spain.

In order to make information on small cell more available, the Petersens built and maintain a website dedicated to this subtype of ovarian cancer. The site includes symptoms, basic facts about the disease, and links to both published research and ongoing studies of small cell. The most recent addition is a physicians network. “Most doctors don’t know how to treat small cell,” notes Maren. “There isn’t a standard protocol.” By listing doctors who do have some experience with the disease, the Small Cell Ovarian Cancer Foundation hopes to give “patients—and even physicians who have their first small cell patient in front of them—somewhere to go for advice.”

The final part of the Small Cell Ovarian Cancer Foundation’s mission is to support research. The organization hosts fundraising events and participates in events organized by other cancer groups. Team Stephanie, a group of volunteers, participates in races all over the country. Not only does Team Stephanie raise money, it also helps raise awareness. “People will ask team members about their shirts and about the disease,” says Maren. “Three friends actually met a small cell survivor in Lake Tahoe because she saw their shirts.”

The Small Cell Ovarian Cancer Foundation became a Partner Member of the Ovarian Cancer National Alliance to help spread the word about this subtype. Maren notes: “The benefit to us is that we’re helping to spread the word about small cell ovarian cancer and the fact that it affects young women. I’m really pleased with our progress to this point.”

For more information about the Small Cell Ovarian Cancer Foundation, please visit http://www.smallcellovarian.org