WHAT ONE GRASSROOTS ORGANIZATION HAS DONE TO ADVANCE BREAST CANCER RESEARCH, DIAGNOSIS AND TREATMENT, PROVES THAT LITTLE GUYS CAN HAVE A PRETTY MAJOR IMPACT
twenty-two years ago, six Greenwich women decided to take on a formidable and invasive opponent: breast cancer. At the time, their mission was personal. One of them was suffering from an advanced breast cancer; her prognosis devastating. Instead of organizing casserole deliveries, the women helped by doing what their friend wanted most: launching a campaign focused on eradicating the disease and supporting its victims.
Two decades later, what those friends began when they launched Breast Cancer Alliance (BCA) is even more remarkable considering its long—make that staggering—list of accomplishments for a grassroots nonprofit that has a paid staff of only two and relies on hundreds of dedicated volunteers.
Since its inception the Greenwich-based BCA has been mission driven—investing more than $25 million in research. Last year it distributed close to $2 million to jump-start groundbreaking studies and support young researchers; awarded five fellowships to promising doctors training as breast oncology surgeons and dedicated almost $300,000 to prevention and treat-ment efforts close to home.
“It’s so moving to think of the foresight the [founders] had and how that focus has been so far-reaching and remarkable,” Mary Jeffery, president of the BCA, says of the legacy created by friends of the late breast cancer victim Mary Waterman (Lucy Day, Susan Elia, Kenny King Howe, Valerie Marchese and Cecile McCaull). “What began with women who were so passionate and committed has evolved into an organization with a unique mission focused on improving survival rates and quality of life.”
The BCA is also known in these parts for its hot charity-circuit ticket. Its annual October luncheon and fashion show—the largest fundraising benefit in Greenwich—draws more than a thousand people to the Hyatt Regency in support of the cause.
As the BCA gears up for th eluncheon on Tuesday, October 30, we take note of the ways this event—along with the expanding efforts of the nonprofit—are making a difference in the lives of those near and far impacted by breast cancer.
COMMUNITY IMPACT: PREVENTION & HEALING
The core of the BCA’s mission is to support breast cancer victims and prevention efforts by underwriting community-based programs at regional hospitals. “It goes back to our roots, that history of friends and neighbors coming together to help each other in a very community-minded way,” explains BCA Executive Director Yonni Wattenmaker.
Last year, the nonprofit spent close to $300,000 funding programs at hospitals is Fairfield and Westchester counties, including Greenwich, Stamford and Norwalk hospitals, St. Vincent’s Medical Center and Bridgeport Hospital’s Norma Pfriem Breast Center.
Yonni notes that at each of these institu-tions, the BCA has focused its generosity on women considered marginalized by the healthcare system. The group favors supporting a diverse array of projects that help people access prevention and treatment regardless of their ability to pay. That includes funding programs that provide tumor biopsies for women who can’t afford them (at Stamford Hospital) or staffing mobile mammography vans and patient hotlines with bilingual professionals. “What we look for are measurable results,” says Yonni. “We want to know these efforts are making an impact.”
She explains that the BCA’s definition of who qualifies as “underserved” is intentionally broad. While serving low-income women is an important consideration, so too, is meeting the needs of breast cancer patients who might struggle with unexpected burdens while in treatment—issues such as childcare expenses, the inability to work or crushing medical bills. “Breast cancer can create a whole new set of challenges for someone who had a lot of stability before the diagnosis,” she says. “And so, when we say underserved, we’re thinking of all kinds of people with breast cancer, because it can complicate lives in so many different ways.”
To increase access to care for low income women, the BCA has helped fund a mammography program at Greenwich Hospital that’s provided more than 300 free screenings in the past two years. “We can’t stress enough the importance of early detection, and mammography is the key to that,” says Dr. Barbara Ward, medical director of the Breast Center at Greenwich Hospital and a member of the BCA’s Medical Advisory Board. “With regular mammography you can find things like stage-zero and stage-one breast cancers, which are highly treatable. The idea that early intervention is life-saving and game-changing can’t be stressed enough, so this program is really providing basic healthcare at the most grass-roots level.”
TRAINING THE NEXT GENERATION OF BREAST SURGEONS
Typically, women who undergo mastectomies are operated on by general surgeons, not oncological specialists who devote their operating room skills exclusively to patients diagnosed with breast cancer. “And for many reasons, it’s just not ideal,” says Yonni. “When you are undergoing treatment for breast cancer, you want the person doing that surgery to understand your disease from a physical and psychological perspective in the most complete way possible. That just can’t happen with someone who is only doing a small percentage of breast surgeries a year.”
To provide breast cancer patients with access to true experts, BCA has awarded a total of thirty-three $75,000 fellowships to doctors training in Connecticut, New York and New Jersey. Five more doctors started BCA fellowships last August. When choosing one-year fellowship recipients, the BCA seeks aspiring oncological breast surgeons who are truly exceptional. “They are coming from great schools with great credentials,” Yonni notes. “And they have real interest in serving those impacted by breast cancer.”
“These doctors are making a broad impact because they are now practicing in all corners of the United States and as far away as Ireland,” says Lisa Fischer, a BCA volunteer and breast cancer survivor who serves as the organization’s Breast Fellowship Grants chairman. “While their training is focused on breast surgery, they are really poised to help patients by becoming experts in the disease in all areas. Their grants continue to give back because they are becoming leaders in the field and are making a difference in care in their communities.”
Case in point is Dr. Ibrironke Adelaja, who was awarded a BCA fellowship in 2013, while training at Rutgers Cancer Institute. She went on to establish a comprehensive breast cancer program at the Fresno branch campus of the University of California, San Francisco. Dr. Adelaja’s program has been profoundly impactful, because, as Yonni points out, “she brought it to a community that was underserved and lacked a strong community-based breast cancer program.”
Dr. Adelaja says her fellowship honed her surgical skills, but also taught her about the psychological toll breast cancer takes. “It has been rewarding to help men and women learn that there are so many new treatment options and that survival rates with early-stage breast cancers are high and to share the promising treatments for late-stage cancers,” she says. “It is humbling and satisfying to watch the warrior spirit emerge as a woman endures and finishes her treatment from breast cancer.”
SPEARHEADING EXCEPTIONAL RESEARCH
At the University of Illinois’s Chicago campus, Dr. Peter Gann and a small team of researchers are attempting to look at breast cancer tumors up close in the most personal and detailed way possible.
With the help of a BCA-funded $100,000 Exceptional Project Grant, Dr. Gann’s team is using computerized patterned analysis to look at malignant cells taken from breast cancer patients, employing some of the same technology that’s been used to advance computerized facial recognition and self-driving vehicles. “What we’re trying to do is take advances that have happened with computerized vision and look at breast cancer in a way that isn’t possible with the human eye,” explains Dr. Gann. Through its work the research team is hoping it can reveal unique characteristics in an individual’s breast cancer tumor, which may ultimately help doctors pinpoint genetic variations in their cancer cells. “Breast cancers, like most cancers, are very heterogeneous within themselves, but we can’t see that on a pathology slide using techniques that are almost two hundred years old,” he explains.
He says that not being able to see all those potential variations “is a major barrier to precision oncology.” Dr. Gann hopes that by revealing them, his team’s work may ultimately allow doctors to better personalize therapies and therefore improve patient outcomes. At the heart of his research is the question of why some breast cancer patients presenting with the same kinds of cancer respond better to treatment than others. Dr. Gann’s study is in many ways typical of the kind of nascent and potentially groundbreaking research the BCA seeks to support.
“The potential for impact and innovation are the two main things we look for,” says Karen Lowney, a breast cancer survivor and BCA volunteer who cochairs the Research Grants Committee. “We want things that show promise, but not necessarily the hot thing being funded at the moment by the big organizations.”
Karen notes that the more than $25 million the BCA has pumped into research since its inception is especially significant because it gives researchers such as Dr. Gann a chance to jump-start scientific investigation in an increasingly competitive environment for research dollars from major institutions such as the National Institutes of Health. Attracting those dollars is particularly difficult when research is innovative. “You need good data before you go forward, but how do you get it?” says Karen. “We’re trying to give promising researchers that chance.”
Getting research grants from the BCA isn’t as simple as writing a well-crafted proposal. Careful analysis goes into each proposal that the BCA receives, and the multistep review process takes months. Karen explains that besides a knowledgeable volunteer committee and medical advisory board, the BCA relies on modestly compensated medical reviewers—an expert panel that includes surgeons, radiologists and oncologists—to help it zero in on the most promising and innovative proposals. “And we ask ourselves hard questions,” Karen says. “Does this proposal really match with our mission of eradicating breast cancer?” Applications are scored on a scale of one to ten, and typically those scoring in the eight to ten range go on for more vetting.
Once awards are granted, the BCA stays in touch with research teams. “We take a real interest in these grants from start to finish,” says Mary. “We visit our research sites, and we are also starting to hold medical symposiums in other cities. It’s one way we are expanding our influence and outreach as we grow.”
Focus on Hope
A 2017 American Cancer Society report highlighted an encouraging trend in breast cancer. In the past twenty-five years, survival rates for the disease have increased by 40 percent. “A lot of what’s changed for breast cancer victims is directly attributable to research, and the Breast Cancer Alliance has very much been a part of that,” says Dr. Ward. “If you think of the idea that research builds on itself and is part of the big picture [the BCA’s] effect has been far-reaching in the way it has funded and supported research.”
“The message we like to get out is that there is so much hope and good treatment, even with the tougher cases,” says BCA President Mary Jeffery. “With all the energy we’re putting into fighting this disease, I would like someone to imagine she’s got a world of teams out there trying to support her.”
DR. WARD HIGHLIGHTS SOME OF THE GAME-CHANGERS CREATING A MORE HOPEFUL OUTLOOK FOR WOMEN AND MEN AT RISK OF OR DIAGNOSED WITH BREAST CANCER.
1 Increased awareness about the importance of mammography screenings. “It saves lives. We know it, see it and live it every day,” she says.
2 The advent of personalized medicine. “Research has taught us so much about how to personalize care. We know that one size doesn’t fit all when it comes to treatment.”
3 The evolution of surgical interventions. “Everything is more targeted. We’re targeting tumors, targeting with radiation treatments. The result has been fewer side effects, less pain and better survival.”
4 Improved understanding of genetics, which has motivated women carrying BRCA1 and 2 genes to consider prophylactic mastectomies. “Those women will likely never have breast cancer,” she says. These advances have also revolutionized the treatment of some breast cancers, helping some women with metastatic disease live longer.
MYTH VS. FACT
What You Need to Know Now
October is Breast Cancer Awareness Month, and when we asked the BCA team to identify a myth about the disease they would like to dispel, there was striking unanimity in their answers. “I think the biggest one, without a doubt, is that you are immune from breast cancer if you don’t have a strong genetic connection in your family,” says Yonni. Indeed, Dr. Ward points out that the vast percentage of breast cancer cases—as many as 80 percent—have no traceable family history of the disease. “I see breast cancer in the most healthy people,” she says. “They are able to battle it better because of their health, but it’s so important to stress that no one is immune.”
DR. WARD’S ADVICE FOR ALL WOMEN
Start getting annual mammograms at age forty. “This habit gives everyone a chance to catch the disease early when it is so treatable.” She makes her recommendation despite a controversial 2017 change in guidelines from the American Cancer Society, which suggests mammograms are optional before age forty-five. “The confusion this has caused is enormously frustrating,” says Dr. Ward. “And without that mammogram, there’s a potential lost opportunity for an early diagnosis.”