Leaving a Legacy: How Patients Launch Their Own Cancer Nonprofits

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.

“I assumed I was doing something wrong because I couldn’t find the organization, and then I realized that there was none,” Marquardt, founder of the Pancreatic Cancer Action Network, says. “It seemed like this was a disease that was very overlooked, underfunded, and my mother was dying and I needed to do something.”

ASSESSING YOUR MISSION

Often, when people are diagnosed with cancer and there are no relevant patient advocacy groups near them, they or their loved ones are inspired to start groups of their own. That can mean creating a simple platform to host support groups; providing a range of patient support services, such as in-person and online chat groups, educational resources and mentorship by survivors; offering many of those services and also supporting or conducting research; or advocating for new policies, laws or regulations.

But is starting a patient advocacy group a good idea? When does it make sense and when does it not? How does one even get started with such an undertaking?

The answers to these questions are deceptively complex. “Many people start advocacy groups because they’d like to fill a gap, or quite honestly, often times it’s for channeling their own healing,” says Katherine Sharpe, senior vice president of patient and caregiver support for the American Cancer Society. “But often, what you see is that, if they don’t have the sufficient resources, these small groups can be very challenged to grow and develop.”

Just how big a challenge is survival for a nonprofit? Last year, the most recent list of not-for-profits registered with the IRS showed that 64 percent of those that had launched in 2005 were still on the books, 28 percent of them showing evidence of financial activity.

To start on solid ground, a nonprofit needs resources that come in many shapes and sizes; infrastructure, funding, expertise and volunteers are all assets that must be considered and secured. There are several organizations that make it their mission to offer support to nonprofits in the form of loans, training and financial management resources, such as the Nonprofits Assistance Fund and the Nonprofit Finance Fund. Other resources, such as loans and grants, can be secured through government assistance, corporate funding, bank loans or lines of credit, private endowments or even bartering — for example, negotiating a free office space in exchange for managing the property on behalf of the owner.

However, perhaps the most important of these resources is time, and it’s up to each individual to honestly assess how much they’re willing and able to give. If those who want to start groups are working at other jobs full-time, will they need to quit in order to launch their nonprofits? Can they afford that?

Windmueller channeled her time and energy into CancerDancer, a nonprofit that “celebrates the lives of those affected by ovarian cancer in an effort to educate, empower and stimulate research leading to a cure.” Windmueller began to secure funding by registering with the IRS before requesting individual donations from friends, family and community members. From there, she began to secure larger donations from corporations, such as DuPont.

“You could say, ‘I’m not going to be a nonprofit,’ but you’ll have a very hard time getting donations from people,” Windmueller says of taking the time to register with the IRS. “Even my mother wouldn’t write us a check.”

Although CancerDancer’s reach is powerful, it is also relatively small, confined only to patients with ovarian cancer within central Virginia.

“We don’t aspire to be Susan Komen,” she says. “We are not interested in growing that big, because my time is precious. I’m not even supposed to be here anymore. I believe in CancerDancer and I know how much good it does, but on the other hand, this isn’t the only thing I want to do with the hours I have left on this Earth.”

Despite the group’s small size and local reach, Windmueller emphasized that it is possible to stay small, be successful, raise awareness and change lives without sacrificing your full-time job and other personal commitments: The key is simply to focus.

“You have to think about what your mission is,” she says. “What are you really trying to accomplish? What are you trying to do?”

By delivering custom “comfort kits” to newly diagnosed women and hosting informational quarterly brunches, CancerDancer’s mission is to raise awareness of ovarian cancer’s symptoms and empower and educate patients in central Virginia by connecting them with survivors.

“You have people who have no idea, literally no idea, what’s about to happen,” Windmueller says. “And then you have women who have been through it and they can say, ‘Look, this is what it was like for me.’ And then you have women who are 18, 19, 20 years out, and I think it’s really important for women newly diagnosed to meet women who are alive 20 years later. In ovarian cancer, the statistics are terrible. You just think, ‘That’s it, I’m going to die.’ But here are people that didn’t.”

One of the many women touched by CancerDancer is Vikki Curtis, a 65-year-old former research analyst, wife and mother of two who was diagnosed with an ovarian carcinosarcoma three years ago.

“I find hope and inspiration from hearing other survivor stories,” Curtis says. “They’re supportive, they’re interested in you and they’re willing to offer kind words. That was a big source of comfort to me.”

Curtis also emphasized the importance of CancerDancer’s role in advocacy: They speak about clinical trials, hold events that raise awareness within the community, give personalized advice on what questions patients should ask and educate the public about the signs of ovarian cancer that she and so many others have overlooked.

“It’s a silent killer,” she says. “The symptoms are often confused with other things, and they’re so difficult to detect.”

PASSION WILL MOVE MOUNTAINS

Beyond patient and family support, there’s another reason advocacy is so important: It takes the silence out of cancer, bringing a voice to the otherwise voiceless and educating patients on matters that are critical to their own survival, helping them become their own advocates.

“The purpose of an advocacy group is to be a mediator between a patient and the various entities that impact their treatment,” says Erin O’Neill, vice president of advocacy, volunteer engagement and grassroots strategies at the American Cancer Society Cancer Action Network. That can mean an organization helps remove barriers to treatment caused by political and legislative systems or by educational, emotional, clinical or financial issues. “[These all] impact patients’ treatment and their survivorship in ways that may not be the first thing that comes to mind when you hear the words ‘You have cancer,’” O’Neill says.

While CancerDancer operates on a local scale, the Pancreatic Cancer Action Network operates on a much grander one, accelerating scientific research, providing patients with information and resources, mobilizing individual communities and focusing on government advocacy to reach its bold and aggressive goal to “double pancreatic cancer survival by 2020.” “Passion will move mountains,” Marquardt says. “And if you remove the fear, you can do anything.”

In November of 1998, energized and determined due to her mother’s diagnosis, Marquardt held her first fundraiser, a celebrity gala at the Beverly Hills Hotel. Because she couldn’t find any existing pancreatic cancer organizations, she had to start from scratch, recruiting volunteers from across the country through a small pancreatic cancer chatroom. In February of 1999, Pancreatic Cancer Action Network was officially incorporated; now, 17 years later, it has boosted National Cancer Institute funding for pancreatic cancer research by 500 percent, invested nearly $41.3 million in research since 2003 and recently launched Precision Promise, the first large-scale precision medicine trial that will put the patient at the center of every decision.

But even if you have the necessary resources and are willing to put in the time, how does one person start such a massive movement?

“It’s really important to understand where there are gaps within patient advocacy organizations, rather than replicating something that’s already out there,” Sharpe says.

Marquardt agrees, noting that the first step toward creating any organization should be to “look at the big picture” and develop strategies to help fill those gaps.

“Take a look at the landscape of whatever disease or cause you’re looking at, identify where the needs are and keep in mind that you cannot be everything to everybody,” she says. “We knew in the beginning that we had to create awareness, because there was none. We had to find a way to attract researchers into the field, because there were very few people studying the disease. We had to find a way to provide information to patients and families, and then we had to find a way to mobilize the troops.”

By identifying their four key objectives early — raising awareness, attracting researchers, providing information and assembling support — Marquardt was then able to take the next critical step: creating a plan of action. “If your why is big enough,” she says, “your how will become glaringly apparent.”

LEAVING A LEGACY

Beyond raising awareness, driving policy change, funding research and improving the lives of those affected by cancer, advocacy groups have one more, less acknowledged advantage: They change the lives of those involved.

“Whenever you stare death in the face, there’s the inevitable conversation with yourself about, ‘Why was I here? What do I want to do with my time? How can I leave a legacy?’” Windmueller says. “Having something like this, where you know that you’re doing some good for the world, is really wonderful when you’re contemplating the meaning of life.”

“It’s the opportunity to be empowered against something you were so powerless against,” Marquardt says. “Taking your passion and streamlining it into a strategic, focused effort brings so much joy. It really is such an honor to be able to pay tribute to not only my mother’s legacy, but to all of the others that we’ve lost, all of the others who continue to fight and all of the others who will be diagnosed in the future.”

Since its inception, Marquardt has dedicated her life to the Pancreatic Cancer Action Network, determined to do anything possible to reach its goal of doubling pancreatic cancer survival by 2020. Windmueller has aspirations to expand the geographic reach of CancerDancer by one hour in each direction, reaching even more women in central Virginia and beyond.

Whether they’re delivering comfort kits, revolutionizing clinical trials or simply offering a shoulder to lean on, both women have undoubtedly left their legacy.

“This is a great way to do good,” Windmueller says. “When I leave here, something good will remain.”