As breast cancer
ravaged her body, Susan G. Komen asked her younger
sister for a promise. Komen wanted help to ''cure this
disease.'' After a three-year struggle, the vivacious
young mother with the bright smile died in 1980 at age
And 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.
culture and much more have changed.
In the 25 years
since, the foundation has grown from a small gathering of
women in Brinker's living room to a world-renowned operation
that will have invested roughly $1 billion in
community outreach and research by year's end.
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
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
With the help of
organizations like Komen and prominent figures like
first lady Betty Ford, who spoke openly about her experience
with breast cancer in the mid 1970s, the culture
slowly began to change from breast cancer being a
taboo subject, said 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, 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 over 40 get
regular mammograms, compared with 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 with 74% back then;
the federal government devotes more than $900 million each
year to breast cancer research, treatment, and
prevention, compared with $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
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
every dollar it raises is spent in those areas,
totaling about $157 million this year.
in breast cancer has been touched by a Komen grant,''
said Komen spokeswoman Emily Callahan.
This year the
organization is refocusing its research money to
concentrate on more focused 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, herself a
five-year breast cancer survivor.
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, where Brinker served as U.S. ambassador
to Hungary from 2001 to 2003. 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
health care 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 but had
different personalities, said Brinker, who now lives
in Washington, D.C.
''We were kind of
a good pair because Suzy never thought she was
aggressive or good in school. She was very pretty and
popular,'' said Brinker. It was Komen, a high school
homecoming queen, who taught Brinker how to use
makeup. 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.
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.
While she first
sought treatment in her hometown, she eventually went on
to the Mayo Clinic and then M.D. Anderson. By then, her
cancer had spread.
When her sister
died, a devastated 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.''
has had a close relationship with the Komen organization,
including receiving grants for projects and chairing its
health advisory board, said that the organization
shows the power of a single person.
''It's made a
huge difference in how we approach breast cancer,'' said
Hortobagyi, who said Komen has served as a model for other
disease advocacy movements. ''It has been enormously
He also has a
personal connection, having been part of Komen's treatment
team at M.D. Anderson as a young doctor.
''She was a very
delicate young lady, a very resolute young woman who was
a true fighter,'' he said.
By getting the
subject of breast cancer out into the public, Komen led
women to becoming 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 the age of 45.
''If you look at
where we are today, it's so different. Women have so
many choices,'' said Sachs, who added that her 15-year-old
organization could be viewed as ''one of the
grandchildren of Komen.''
advances made in the 25 years since Komen was formed are
reason to celebrate, the organization's ultimate goal
remains unachieved: the eradication of breast cancer.
About 1 in 8
women will get breast cancer, and the disease is the second
most lethal kind of cancer in women, after lung
cancers. About 41,000 U.S. women died of breast cancer
last year. Worldwide it kills about 370,000 women each
''When you look
at where we are, we're still not where our mission is,
and that's a world without breast cancer,'' Moddelmog