Small cancer charities pack a punch against the disease
Small charities are like small businesses: In order to succeed, you need a revenue plan, a supportive board of directors, a niche that doesn’t duplicate your competitors.
In a year when controversy has rocked two major cancer charities — the Susan G. Komen for the Cure and Lance Armstrong’s LiveStrong Foundation — some donors might prefer to give to local “mom-and-pop” charities that tackle cancer on a much smaller level.
Curémonos offered a free, 12-week Livestrong program in Spanish to cancer survivors earlier this year at the Summit YMCA.
The group Curémonos (“Let’s cure ourselves”) focuses on providing support to Latina breast cancer patients. Diva for a Day pampers a patient with a day at a local spa. The Ruth Estrin Goldberg Memorial has been raising money for research since 1948. And the Madeline Fiadini LoRe Foundation honors a family struck twice by the disease.
All of them share one trait: They were founded by a person or group of people whose sheer perseverance outlasted temporary obstacles.
Although Dora Arias of Mountainside says she went into “panic mode” when diagnosed with breast cancer at the age of 39, she had little difficulty getting the information she needed to understand her treatment choices. A native of Colombia, she came to the United States when she was 7 and is fluent in English and Spanish. She’d also worked at JP Morgan as a project manager, so was used to asking questions.
But once she was done with surgery, she couldn’t stop thinking about all the Latina women who didn’t have good health insurance, or fluency in English.
“How do other women do this? That just stayed on my mind,” she said.
The result, nine years later, is Curémonos, a one-woman charity that helps Latinas cope with breast cancer.
That can mean anything from compiling a list of bilingual doctors, connecting the uninsured or under-insured with programs that might help with expenses, to accompanying a patient to appointments to act as a translator. Helping Latina patients is particularly important because they are one of the groups whose cancer is often diagnosed later and can be more aggressive and harder to treat.
She loves the work — “I never get tired of it” — but has found it’s difficult for a fledgling charity to raise money: “No one wants to give to start-ups. People like to give money to someone that’s established, that has a brand,” she said. “The first time I submitted grants and I was declined, I took it personally.”
It would’ve been easier, perhaps, to accomplish her mission of advocacy within some of the large charities. She approached several organizations, but at the time, they didn’t feel there was a need for a program aimed at Latinas.
“Ultimately, that’s when I decided to do it on my own,” she said. “Psychologically, it’s a healing process for me to be able to help these women when they’re so scared.”
It’s hard for new groups to raise money, said Linda Czipo, executive director at the Center for Non-Profits in New Brunswick. Big charities have a track record and name recognition that gives them a head start in securing donations. “And it’s been really hard for even well-established organizations in this climate,” she said.
Sometimes, people want to keep a loved one’s name alive, but don’t feel up to running a charity indefinitely. They might consider setting up a legacy scholarship within an existing organization, Czipo suggested.
If they have an idea for a specific service to provide, they also might see if they could partner with a bigger charity. In that way, they’d get help with adhering to the special laws and regulations that govern charitable taxes and solicitation.
“Not everyone wants to be involved in that side of things at all,” she said.
Peggy Matzen, of Basking Ridge, became buddies with Debbie Sestokas, of Warren, when they both volunteered for the American Cancer Society after they were done with their own breast cancer treatment. They both had five children and received the same treatment for their cancer.
One week, as they were helping a patient who had just received devastating news of a cancer recurrence, they left wishing there was something more they could do for her. “One of us said, ‘Wouldn’t it be great if we could send her to a spa for a day?’ It was one woman and one thought,” Matzen said.
They were going to split the cost, but from that episode, brainstormed to form a charity, Diva for a Day, that arranges for local spas to donate their services once a month to a patient in the midst of treatment. A local restaurant delivers lunch and a local florist donates a bouquet as well.
“No one’s ever said ‘no’ to us,” Matzen said. Local businesses are more than willing to help in ways besides writing a check.
Initially, they wanted to work through a local hospital, but soon discovered that brought with it too much red tape and liability roadblocks.
Their participating spas are in southern Morris and northern Somerset counties. They’ve already received requests to expand their program to more towns and are trying to build of a network of volunteers to make that possible.
The Madeline Fiadini LoRe Foundation pays for cancer screening tests for people who have no insurance coverage, but do not qualify for government aid. Anyone who meets their criteria can get a free PSA test, mammogram, colonoscopy, cervical cancer screening, oral cancer screening or genetic testing at the foundation’s participating hospitals or dentists.
Madeline Fiadini LoRe, of Bayonne, is a two-time cancer survivor. She first raised money to honor her brother John, who died of liver cancer. Bayonne Hospital’s outpatient oncology center is named for him, while its women’s center is named for her.
“I’m motivational. I’m tenacious,” she said, explaining that she worked her way up from hairdresser to co-owner of an insurance agency. When Bayonne Hospital became a public, for-profit hospital, she could no longer raise money directly for it. Instead, she formed her own foundation in 2008 to cover gaps in funding for the working poor. “I felt it was important to pick up the slack.”
Her biggest problem, she said, is getting the word out about their services. “We have money,” she said, “and we want to spend it.”
Older charities, no matter what their size, have to change and adapt, Czipo said. The classic example is the March of Dimes. Started to raise money to battle polio, it switched its mission to birth defects once polio was eradicated.
“It’s easy to get stuck in a rut,” Czipo said. The best founders retain their passion, yet have a willingness to change with the times.
The Ruth Estrin Goldberg Memorial For Cancer Research was formed by eight friends mourning the cancer death of their 28-year-old friend.
That was 64 years ago, and the group is still going. Not going strong, but going nonetheless.
It gives all of its money to cancer research, with researchers submitting grand proposals to a board of physicians that advises the Springfield-based charity.
The most recent recipient is Manisha Bajpai, a colon cancer researcher at Robert Wood John Medical School of University of Medicine and Dentistry of New Jersey.
At its height in the 1950s and ’60s, the Springfield-based organization had more than 500 members who staged a parade of annual fundraisers: golf outings, fashion shows, an annual ball. The charity has been a mainstay in Jewish philanthropic circles, although it is not a Jewish organization nor need a member be Jewish.
Four of the eight founding members are still alive, but chairwoman Jennifer Weisenthal, of Woodbridge, said the roster shrunk when working women no longer had time to do a lot of hands-on organizing for charities.
Members from that era are now in their 80s and some kinds of fundraising are beyond their abilities. “When they say they can’t do something, they mean it. They can’t,” Weisenthal said. However, one member well into her 90s still vigorously shakes a donation can outside a local business.
She recently broached the topic of disbanding, but met with strong resistance. “They don’t want to give it up,” she said. “They just don’t.”
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