When Emily Campbell was first confronted with the possibility of having ovarian cancer, she and her husband, Chris, found themselves navigating a medical labyrinth. Misdiagnoses, delayed appointments, and an overwhelming lack of resources nearly stood in the way of her getting the right care. “I was lucky. I had a ridiculously determined partner who refused to give up until we had answers,” recalls Campbell.
Campbell has since become a leading advocate for patients often overlooked by mainstream cancer research and funding efforts. Today, she leads Not These Ovaries, an early stage nonprofit dedicated to accelerating research and treatment for rare ovarian cancers, particularly low grade serous and borderline serous ovarian tumors.
Understanding the Unique Challenges
Low grade and borderline ovarian cancers represent only about 10% of ovarian cancer cases, but their differences from the more common high grade subtype make them uniquely difficult to treat. “When a young woman is diagnosed with low grade serous ovarian cancer, she’s usually at a younger age. The average age of diagnosis is 45, compared to 63 for high grade,” Campbell explains. The cancers grow more slowly, which paradoxically makes them less responsive to traditional chemotherapy. “Chemotherapy is usually pretty minimal when it comes to effectiveness, with a response rate of less than 20%,” Campbell says. The disease also recurs in roughly 80% of patients. Despite these statistics, there is currently no FDA-approved frontline treatment tailored for low grade subtypes. This mismatch leaves patients with limited options. Most therapies were designed for the more aggressive high grade cancers, leaving low grade patients fighting with outdated or poorly suited approaches.
The Case for Targeted Funding
The path forward lies in precision. “A lot of the targeted funding that we are trying to fund ourselves is specifically for treatments for low grade and borderline tumors,” she says. Traditional broad research grants often dilute resources across a wide array of subtypes, while rare cancers require laser focus. “There are about 30 different subtypes of ovarian cancer, and they all behave differently,” Campbell explains. “When you dial down to very specific subtypes, you accelerate progress because 100% of that focus goes toward that subtype. They are very different cancers, so they should be treated differently.”
Yet that very specificity makes fundraising more challenging. The rarer the disease, the smaller the pool of people personally affected. For Campbell, the answer lies in connecting donors to tangible outcomes. “We want them to understand that every single dollar goes right to research,” she says. “If an event raises a certain amount, we can tell them exactly how many hours of lab time that covered. That transparency helps people see the impact immediately.”
Collaboration and Community
Advocacy alone cannot transform outcomes for rare cancer patients, and real progress depends on partnership. “There are other advocacy groups that are very open to collaboration and sharing results,” she says. “At the end of the day, whether you’re a patient advocate, a researcher, or a doctor, the goal is the same: to lift patients up and find the right treatment.”
That spirit of collaboration has created a sense of community where there might otherwise be isolation. For many patients, rare ovarian cancer can be a lonely diagnosis. “The more I share my own story, the more others share theirs,” she notes. “Being vulnerable creates connection, and those connections are what make this community stronger.” Her nonprofit’s blog has become a hub for both information and storytelling, with patient voices featured alongside medical insights. The vision is to make newly diagnosed women feel less alone, while also giving them practical tools and access to emerging research.
Urgent Goals in Rare Cancer Research
Not These Ovaries’ immediate priorities are to secure the first FDA-approved frontline treatment for low grade serous ovarian cancer and help develop a reliable screening test. “Right now there is no screening or early detection for ovarian cancer, which is why it’s often caught at advanced stages,” she explains. “That’s why it’s so deadly. A screening tool would change everything.”
Although ovarian cancer accounts for just about 1% of all new cancer cases in the U.S. — roughly 20,900 diagnoses each year — it remains one of the most lethal gynecologic cancers because of its late detection. Within that group, low grade serous ovarian cancer is even rarer, representing only 2–5% of serous ovarian cancer cases. That means only a few thousand women nationwide are diagnosed annually, yet their treatment options are strikingly limited. “If we had $10 million today, it would be deployed immediately,” Campbell says. “There’s a true need for this research, and researchers are ready to go. Early detection, treatment, understanding disease progression — all of that requires funding.”
Act Fast, Today
Campbell returns again and again to the importance of targeted funding. “No cancer research project is frivolous,” she emphasizes. “Even if you learn that something doesn’t work, that’s still an answer. It gets you closer to the right one. But the fastest way to meaningful results is targeted funding.” Progress against rare cancers will only come with focus and collaboration. For every patient waiting for treatment, time is the difference between life and loss. “I wish our nonprofit didn’t need to exist, but right now, it does.”
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