Foundation marks 25 years of fighting breast cancer

As breast cancer ravaged her body, Susan G. Komen asked her younger sister for a promise.

Komen wanted to help “cure this disease.” After a three-year struggle, the vivacious young mother with the bright smile died in 1980. She was 36.

Her sister, Nancy Brinker, kept her promise to do something, founding the Susan G. Komen Breast Cancer Foundation two years later.

“I knew it had to be big. We had to change a culture,” Brinker said.

In 25 years, the foundation has grown from a gathering of women in Brinker’s living room to a world-renowned operation that will have invested about $1 billion in community outreach and research by year’s end.

The Dallas-based organization has 200 employees, more than 100,000 active volunteers and 125 affiliates. Its annual Race for the Cure has grown from 800 women who ran for charity in Dallas to about 1.5 million participants in 120 races worldwide. The foundation has funded work in more than 47 countries.

The nonprofit is celebrating its 25th year with a new name -- Susan G. Komen for the Cure -- an edgy new advertising campaign that includes T-shirts reading: “If you’re going to stare at my breasts, you could at least donate a dollar to save them”; sales of pink “promise” rings; and a pledge to raise another $1 billion in the next 10 years.

With the help of organizations like Komen and prominent figures such as former First Lady Betty Ford, who spoke openly of about her experience with breast cancer in the mid-1970s, the culture slowly began to change from breast cancer being a taboo subject, said Dr. Gabriel Hortobagyi, president of the American Society of Clinical Oncology.

“I grew up at a time when most families didn’t talk about either sex or cancer,” said Hortobagyi, 60, chairman of the department of breast medical oncology at the University of Texas M.D. Anderson Cancer Center in Houston. “Those were sort of taboos. It was sort of shameful if anyone in the family had cancer. And people didn’t talk about breasts, either healthy or sick.”

Today, the Komen Foundation reports:

* Nearly 75% of women older than 40 get regular mammograms, compared to fewer than a third who got breast exams in their doctor’s offices in 1982;

* The five-year survival rate for breast cancer, when caught before it spreads, is 98%, compared to 74% in 1982;

* The federal government devotes more than $900 million each year to breast cancer research, treatment and prevention, compared to $30 million in 1982.

“I truly believe if Nancy hadn’t started this thing, that that would not be the case. It just needed that special focus,” said Hala Moddelmog, president and chief executive officer of Komen.

The Komen organization says it is second only to the U.S. government as a source of funding for breast cancer research and community outreach programs, which include education, screening and treatment. It says about 84 cents of each dollar it raises is spent in those areas, totaling about $157 million this year.

“Every advance in breast cancer has been touched by a Komen grant,” Komen spokeswoman Emily Callahan said.

This year the organization is refocusing its research money to concentrate on more specific areas, such as finding biological signs that can help predict cancer before symptoms appear.

Moddelmog says the goal is to support research that is “transformational and that definitely ties back to the cure.”

Funding both research and community programs is important, said Moddelmog, a five-year breast cancer survivor.

“We’re helping to discover the cures by funding the research. And we’re helping to deliver the cures by providing access,” Moddelmog said. “What we want to wake up and see one day is a world without breast cancer.”

There will be an international emphasis this year, including a September summit in Budapest, Hungary.. The event will pair 25 U.S. activists with 25 people from around the world to look at the social, cultural and financial circumstances that prevent women from getting quality breast healthcare and treatment.

Brinker said that her sister might not have foreseen her legacy, but she knew Brinker would tackle breast cancer head on.

Growing up in Peoria, Ill., the sisters followed along with their mother on volunteer projects. The sisters were close, said Brinker, who now lives in Washington, D.C.

Brinker was the more driven sister, the family’s “Miss Fix-It,” she said.

But above all, “she was always looking out for me and I was always doing things to look out for her too.”

By the late 1970s, Brinker was living in Dallas, part of the executive training program at luxury retailer Neiman Marcus. Komen, who was three years older, was raising her family in Peoria, working as a part-time model. They remained close, keeping up by phone.

One afternoon, Komen called to tell Brinker that her doctor had found a lump in her breast that needed to be biopsied. Komen had a mastectomy, but about five months later she found a lump under her arm.

She first sought treatment in her hometown, but she eventually went on to the Mayo Clinic and then M.D. Anderson. By then, her cancer had spread.

When her sister died, Brinker knew she had work to do.

“It wasn’t going to be enough to raise money from some very wealthy people; we needed to change the culture,” said Brinker, who herself was diagnosed with breast cancer in 1984. “We needed to approach this as an eradication of an entire disease. We fund the entire spectrum.”

Hortobagyi, who has had a close relationship with the foundation, including receiving grants for projects and chairing its health advisory board, said the organization shows the power of a single person.

“It’s made a huge difference in how we approach breast cancer,” said Hortobagyi, who called Komen a model for other disease advocacy movements. “It has been enormously influential.”

By getting the subject of breast cancer out into the public, Komen led women to become advocates, said Jean Sachs, executive director of Living Beyond Breast Cancer, a nonprofit that provides breast cancer education. Komen is one of the sponsors of the group’s annual conference for those diagnosed with breast cancer under age 45.

“If you look at where we are today, it’s so different. Women have so many choices,” Sachs said.