When 33-year-old Susan Goodman Komen was diagnosed with breast cancer in 1977, her first reaction was fear. At the time, the disease stigmatized women and was rarely mentioned in public. Komen wanted to avoid surgery at all costs and remained a passive participant in her treatment until she became a Stage IV cancer patient. She died three years after her initial diagnosis, but her younger sister, Nancy Goodman Brinker, carried on her fight. Brinker had promised her sister she would do everything she could to end breast cancer forever, and the organization she created in her sister's name in 1982 has accomplished more than Suzy, or perhaps anyone, could have predicted.
Earlier this year, to mark its twenty-fifth anniversary, the world's largest network of breast cancer survivors and activists and the largest private funder of breast cancer research in the United States, changed its name to Susan G. Komen for the Cure and unveiled a new logo. The organization also announced it would award $1 billion for breast cancer research and educational programs over the next ten years — more than the entire amount it has awarded since its founding. Komen enters its next phase with a new president and CEO, Hala Moddelmog, who joined the organization in September 2006 after a long and successful career at a Fortune 500 company.
Recently, Philanthropy News Digest spoke with Brinker and Moddelmog — both cancer survivors — about the organization's accomplishments and aspirations.
Philanthropy News Digest: Nancy, promising your sister that you would do everything in your power to end breast cancer was a tall order. Where did you start?
Nancy Brinker: At the time of my sister's illness and death, I was living in Dallas and was married to Norman Brinker. Norman was — and is — a successful businessman, and he helped me gain access to people with wealth. I started with a couple hundred dollars of my own money, cleared out one of our guestrooms, rallied friends to help, and scrambled to find resources. It was a slow process — remember, this was long before e-mail was common. In the beginning, the bulk of our money was raised through individuals, ticket sales, and events, including a luncheon in Dallas in 1983 that was attended by former First Lady Betty Ford, who had made news in 1974 by discussing her radical mastectomy. The proceeds from those early fundraisers gave us a small cushion and enabled us to keep our activities going, but I quickly realized we had to create a large network with satellite groups in key cities if we wanted to accomplish our goals.
As you said, we had taken on a huge mission — to create a world free of breast cancer — and everyone advised us against it, telling us instead to focus on a single area or aspect of the disease. To me, that was unacceptable, since no organization existed at the time to advocate and raise money for breast cancer research, education, and treatment. Nor was there an organization devoted to finding ways to overcome the barriers faced by people with no insurance or access to health care. In the early 1980s, there was no free access to comprehensive cancer centers and little information about breast cancer and its warning signs. Back then, one in four women who were diagnosed with the disease — even in its earliest stage — died within five years. All we could offer them in the way of hope was early screening, but most women in America weren't even having mammograms then. We had a lot of work to do.
PND: Did established cancer organizations perceive your organization as a competitor or as a collaborator?
NB: Initially, I approached a few of the large, established organizations about collaborating — which I believe is the best approach — but they didn't think my project would work. Plus, it wasn't "sexy." I once sat down with the CEO of a large bra company who said, "We sell fashion, beauty, and inspiration; our customers don't want to think about cancer." That type of interchange was frequent in the early days. But I was persistent.
I'd learned a lot during the late 1960s and early 1970s as an executive trainee at Neiman Marcus by observing the company's founder and my mentor, Stanley Marcus. I learned how to sell, package, and exhibit things — and to create a demand for them. Now, that's hard to translate to an intangible concept like breast cancer, but Stanley's basic tenets were "Quality is most important, presentation is key, 'no' means 'maybe,' and never stop selling." During the organization's first ten years I heard "no" all the time. But I had committed myself to our mission long-term and had promised my sister that if it took me the rest of my life, I'd do it — and it has taken me the rest of my life.
I had committed myself to our mission long-term and had promised my sister that if it took me the rest of my life, I'd do it — and it has taken me the rest of my life....
PND: What happened to turn the situation around?
NB: Things developed slowly at first. By the end of the 1980s, about twenty Race for the Cure events were taking place in cities across the country, and we had managed to secure corporate sponsors for them. But it was the first national race — in Washington, D.C., in 1990 — that really launched us. Legislators, sponsors, and the American people saw a thousand participants take part. There had never been that type of turnout for an event like that before, and it made people realize that the issue was important and women were going to support it. Today, more than a million people participate in Race for the Cure events each year.
PND: When did the organization decide to hire a CEO?
NB: For the first fourteen years we only had executive directors. Susan Braun became our first CEO in 1996 and was here for ten years. She did an excellent job building the organization, but organizations have growth cycles. This is a new cycle for Komen, and I believe Hala is the person to lead us.
PND: What set Hala apart from the crowd?
NB: We went through a long search process, but we knew what we wanted: someone strong who had run a large company and who had franchise experience, since our affiliates are organized much like a franchise; someone with energy, vision, leadership, and people skills; and someone who is a breast cancer survivor. With Hala, we got all that.
PND: Hala, before you joined Komen, you'd had an extremely successful career in the corporate world, including a long tenure as president of Church's Chicken. Why did you choose to move to the nonprofit sector?
Hala Moddelmog: It wasn't something I planned to do. When the search firm brought the job to my attention, I was meeting with private equity firms in New York to discuss the next business I might run and potentially buy into. But I researched Komen and learned it was an incredible brand, a tireless educator, and a longtime funder of breast cancer research. When I met Nancy and the other board members — including Norman Brinker, a legend in the retail food-service industry — I was impressed by their desire to serve the underserved and address the disparities within the healthcare system.
PND: How does your previous professional experience inform your work as CEO of Komen?
HM: I understand strategy, marketing, branding, and general management. In addition, virtually my entire career, from 1981 on, has been with franchise organizations; I've been the president of franchises for ten years. As with corporate franchises, Komen has a headquarters that is charged with protecting and growing the brand, but much of the action takes place in the field. Our affiliates have a lot of freedom to be creative and to work on specific needs in their communities.
NB: Hala has been successful in the for-profit world, and she is running our organization like a business. In a way, creating the largest breast cancer organization in the world has been like building a business — the business of saving lives.
PND: Hala, have you found being the CEO of a nonprofit much different from running a for-profit enterprise?
HM: There are more similarities than people might realize. It's still about the top line. We have to bring in revenues in order to fund our education, outreach, and research programs, and it's my responsibility to drive that growth. It's also my responsibility to see that we are as efficient as we can be, so as much money as possible goes to research and education, and to oversee our grants to ensure that our investments are wise ones. Working with the Komen board isn't that different from working with a corporate board, either. I report to the board chair, and anything that represents a big investment of staff time, resources, or funds, I bring to the board's executive committee.
NB: We have a nine-member board, and its small size enables us to get things done. Our board members also bring different backgrounds and perspectives to the table. Some have great nonprofit experience, while others have enormous business experience. Our new chair is former U.S. congressman Ken Bentsen.
PND: Hala, what's it like to work with a founder who remains heavily involved in the organization?
HM: In the for-profit world, I never worked with the founder of a company, so it's different. But it's also beneficial because Nancy has so much institutional knowledge and passion for the work — and she's a great marketer. Having her as part of the board has been a positive experience. Mainly, I want Nancy to remain involved because she's such a force in the cancer community and represents hope for so many cancer survivors.
NB: I know it's not easy trying to run an organization when you have a founder with a strong personality. While I'm always going to voice my opinion, Hala's running the organization. Plus, we have a strong board, so neither of us has the final say in the decision making.
PND: Nancy, not only are you the founder of Susan G. Komen for the Cure, you're also its face, its spokesperson, and perhaps the most recognizable advocate for the breast cancer movement. How do you see yourself in the organizational mix?
NB: I consider myself the keeper of the vision. The organization takes care of my business travel expenses and provides me with support staff, but I've always been a volunteer and have always done outside work to provide an income for myself, including public speaking and consulting. I choose to keep it that way because if I'm not a volunteer, how will we get other people to volunteer? Part of the power and strength of what we've been able to accomplish is the hundred thousand volunteers who work for us on a daily basis. I don't think many other organizations can say that.
Part of the power and strength of what we've been able to accomplish is the hundred thousand volunteers who work for us on a daily basis....
PND: What was the impetus behind the organization's new name and logo?
HM: Komen is celebrating its twenty-fifth anniversary this year and, before I arrived, the staff, Nancy, and the board decided it would be a good time for the organization to reassert itself. Since the Race for the Cure is our strongest and best known asset — it's now the largest series of 5K run/fitness walks in the world — we made it part of our name. We also wanted to keep "Susan G. Komen" in the name because it signifies Nancy's original promise to her sister and keeps the personal side of breast cancer right up front. The new name, Susan G. Komen for the Cure, is inclusive, encompassing everyone who is touched by breast cancer, and it sounds more modern than the old name.
NB: The organization's original name was the Susan G. Komen Breast Cancer Foundation for the Advancement of Breast Cancer Research, Treatment and Education, which from the beginning underscored our dual commitment to research and education. But the name itself was limited and unwieldy. Over time, there was also a lot of confusion about the Race for the Cure and the Komen Foundation, which also influenced our choice of names.
HM: Our original logo, a cameo of Susan Komen, was beautiful and right for its time, but we wanted a new logo that would be younger, fresher, and more inclusive. So we took the pink ribbon that symbolizes breast cancer awareness and turned it into an action-oriented image. We hope the new logo and our new name will attract more young women to Komen and encourage them to take up breast cancer as their cause as they move into adulthood. Not only is it good marketing, but young women need to know that they can develop aggressive types of breast cancer. We really need to get the word out that this is not just a disease of middle-aged and older women.
PND: What are Komen's primary sources of revenue?
HM: The Race for the Cure provides 46 percent of our revenues. The national headquarters receives at least 25 percent of the net income from each domestic affiliate race, while up to 75 percent of that income stays in the local community to fund breast health education and breast cancer screening and treatment projects. In addition to income from the races, fundraising provides 20 percent of our revenues, and cause marketing 11 percent.
NB: We also get revenues from a three-day breast cancer walk and from corporate activities. In addition to supporting the Race for the Cure, many of our 130 corporate partners have their own programs, such as BMW's Ultimate Drive and Major League Baseball's Going to Bat for the Cure. We also receive gifts from individuals, foundations, and corporations.
PND: Komen plans to award $1 billion for breast cancer research and community health and education programs over the next ten years. Will the general public continue to be the primary source of revenue for you, or are you looking to raise more money from foundations and other sources?
HM: The general public will always be the major source of our funds, and the Race for the Cure will always represent a major piece of the funding pie. But we will be careful not to rely too heavily on any one source. We also will work with corporate partners, other foundations, and high-net-worth individuals. Diversification in revenue streams is key.
NB: We're ramping up our high-donor programs now and leveraging our visibility in the community. It would be fabulous if some of the recently minted Internet millionaires made a significant donation to our work.
PND: What percentage of your grants goes to research versus education?
Out of every dollar spent, 84 cents goes toward our mission, supporting community education programs and breast cancer research....
HM: Out of every dollar spent, 84 cents goes toward our mission, supporting community education programs and breast cancer research. To break it down further, 35 percent of our funding goes to research and 65 percent to community involvement, which includes 41 percent for education, 16 percent for screening, and 8 percent for treatment.
PND: Do you expect your grantmaking focus to change over the next decade?
HM: Right now, the vast majority of our dollars goes to investigator-initiated research. We use a double-blind process to identify worthwhile projects, and we plan to continue that method. However, this year we've added several new grantmaking categories, including higher-dollar-impact grants. We've also created four new focused areas of study: ductual carcinoma in situ, experimental model systems, biomarker identification and validation, and environmental research methods. Choosing research areas to fund is a change for us; in the past, we've supported what researchers proposed. We initially planned to fund up to $13 million, but the response has been so strong that we added another $7 million, bringing potential funding for the inaugural year of focus-area grants to $20 million.
Outside of that, however, I do not expect our percentages to shift because we will always have to deal with access issues. There are still too many places in our country — and certainly globally — where people don't know about breast cancer, or how to protect themselves from the disease, or lack access to care. If we woke up tomorrow with all the cures for breast cancer in place — there will have to be more than one cure because there are at least six to eight sub-types of breast cancer — we'd still have to deal with education and access.
PND: When did the organization's work become global?
NB: We began giving grants globally in the late 1990s because breast cancer is a global problem. Every year, at least seven million people worldwide die from the disease and close to eleven million new cases are diagnosed. Another ten million women around the world could die from breast cancer in the next twenty-five years. We are working to reduce the burden of the disease on a global level; at present, three of our hundred and twenty-five affiliates are located outside the United States — in Italy, Germany, and Puerto Rico — and we have active programs in Central and Eastern Europe.
HM: While most of our research grants are awarded in the United States because of the phenomenal research institutions, universities, and hospitals here, breast cancer knows no boundaries, and nobody knows where the next transformational step — or cures — will be taken or found. Our grantmaking extends to forty-seven countries, including Israel, Singapore, and China.
PND: How will Komen's past achievements influence your future direction?
HM: The successes of the past ten years, especially, have been phenomenal in terms of growth in revenues, much of which has come from increases in the number of participants in the Komen Race for the Cure. We will continue to sponsor the races because they give people a tangible way to be involved, to feel they are doing something to honor their loved ones and helping to prevent breast cancer. We also want to expand our group of corporate marketing partners, who work with us on cause-marketing activities that give people an easy way to be involved in the breast cancer movement. When someone purchases a product, part of the proceeds goes to Komen. Our affiliate growth will also continue because, even with a hundred and twenty-two affiliates around the country, there are still many blank spaces on the map. We're hoping to develop models to get education programs and treatments set up in those areas without necessarily having to wait for an affiliate to become established there.
We plan to expand our global reach substantially [and] just launched the Middle East Partnership — the first major women's health campaign in that part of the world....
We also plan to ramp up our activities in other areas, such as public policy, where we can use our constituent base to draw attention to the importance of funding for research and access to care and information. And we plan to expand our global reach substantially. We just launched the Middle East Partnership — the first major women's health campaign in that part of the world — with Susan G. Komen for the Cure, the King Hussein Cancer Center in Amman, Jordan, and the M.D. Anderson Cancer Center at the University of Texas in Houston. The partners in that effort will work together to raise breast cancer awareness and provide treatment in Jordan. In addition, we're getting ready to launch a pilot program in ten countries to develop sustainable breast cancer programs and advocacy. Jordan, Saudi Arabia, and the United Arab Emirates have been chosen to participate in the project, and the other countries will be announced soon.
NB: Women of Arab origin generally develop an aggressive form of breast cancer at an earlier age than Western women. Being in Amman was a déjà vu experience for me because in terms of breast cancer awareness, the Middle East is basically where the United States was twenty-five years ago. The model for the pilot program will be created under the auspices of the Institute of International Education, with volunteers, trainers, and others receiving training in how to utilize breast cancer materials in culturally acceptable ways in each country. As we do in our U.S. model, we'll work with local partners.
PND: Nancy, looking back on Komen's first twenty-five years, what are you most proud of? And what are your hopes for the future?
NB: I'm most proud that nearly every advance in the science of breast cancer over the past twenty-five years has been touched by a Komen grant, and that our efforts to raise awareness about the disease have contributed to some real victories. Today, nearly 75 percent of women over the age of forty have mammograms — the single most effective tool for detecting breast cancer early — on a regular basis, compared to fewer than 30 percent in 1982. The federal government now devotes more than $900 million to breast cancer research, treatment, and prevention each year, compared to $30 million in 1982. And there are 2.3 million breast cancer survivors in the United States today, the largest group among all cancer survivors.
As the organization goes forward, I'd like more members from the philanthropic community to join us in our efforts. We're building a larger program and want to attract more large donors to support it. We raise more money for, and give more money to, this cause than any other breast cancer organization, and with additional support we can make a significant contribution to answering many of the complex research questions that need to be answered, create better care for breast cancer patients and survivors, fill gaps for the uninsured, and help educate legislators.
When we first started, breast cancer came with a five-year survival rate of 74 percent for women over the age of 40, even if it was detected in its earliest stage. Today, the five-year survival rate is 98 percent. But that's not our end point — we're going for the cure. Our ultimate goal is to put ourselves out of business.
PND: Well, thank you both.
NB: Thank you.
HM: It was a pleasure.
PND's Alice Garrard spoke with Nancy Brinker and Hala Moddelmog in April. For more information on the Newsmakers series, contact Mitch Nauffts at firstname.lastname@example.org.