Leaving a Legacy: How Patients Launch Their Own Cancer Nonprofits

Faced with cancer, some launch nonprofit organizations designed to help fellow patients and their families. Here’s how they do it.
Esther Windmueller - PHOTO BY KIMBERLY FROST
Esther Windmueller - PHOTO BY KIMBERLY FROST
Esther Windmueller tried to find the words to explain how it felt the first time she was forced to “stare death in the face” — a feeling that, at age 49, most people have yet to experience.

Diagnosed with ovarian cancer at the age of 42, 20 years before the average age of diagnosis, Windmueller knew the statistics: She had about a 40 to 50 percent chance of surviving the next five years. What she didn’t know was that she had been born with the BRCA1 gene, a harmful mutation that increased her chances of developing ovarian cancer from 1.3 percent to 39 percent. If she had known earlier, perhaps she could have done something. She could have been vigilant, been more aware of the symptoms. Or if she had a strong family history, she might have considered preventive surgery.

It was October of 2009, and her boyfriend’s mother had died of this very disease only two weeks before.

“I was angry,” Windmueller says. “I was like, ‘Why didn’t I know these things before this happened to me? Why isn’t there anybody around for me to talk to?’”

Although her cancer went away after surgery and chemotherapy, it came back in August of 2010. She recounted the “huge hole” that she felt existed in the area of information and support for patients with ovarian cancer in her hometown of Richmond, Virginia. She wanted to do something about it.

Fourteen years earlier in June of 1996, Pamela Acosta Marquardt stood in a hospital room with her mother, who had just been diagnosed with pancreatic cancer and given three to six months to live. Feeling powerless, Marquardt turned to the Internet, desperate to find an organization that could help.

Only, she found nothing.

Talk about this article with other patients, caregivers, and advocates in the Ovarian Cancer CURE discussion group.
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