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.
“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.”


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.

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