They Chose to Make Ovarian Cancer a Family Battle

During those long, agonizing days, as their beautiful mother was nearing death from ovarian cancer, Lynne Cohen’s daughters decided they had to act.

The daughters, Amy, Erin and Whitney, all in their 20s, vowed not to let the disease drift away with their mother. As they gathered in a hospital waiting room, the sisters pledged to start a charitable foundation in their mother’s name.

“The sadness, frustration and anger just fused,” says Erin Cohen, 25.

After their mother’s death in 1998, as the sisters took the first steps toward creating the Lynne Cohen Foundation for Ovarian Cancer Research, they learned several things. Although there are a few other advocacy groups dedicated to ovarian cancer, much more work is needed.

They also learned that medical researchers have long believed that government and private spending on ovarian cancer research is inadequate. That unlike breast or colon cancer, for example, there is no early detection test for ovarian disease, which means that the illness often is diagnosed at a later, more dangerous stage. And that women’s awareness of how they can prevent the disease and recognize its early symptoms is low, according to numerous surveys.

The 2-year-old foundation has begun addressing some of those problems, having already raised $1.2 million for half a dozen research and health care projects. The projects--including a New York City clinic for minority women who are at high risk of developing cancer and a study underway at the Cleveland Clinic in Ohio to develop a screening test that would help detect ovarian cancer at an early stage--have won praise from cancer researchers across the country.

While $1.2 million is small potatoes in some philanthropic circles, it makes a difference in ovarian cancer research, where government funding has lagged, says Dr. Gordon Mills, a leading researcher at M.D. Anderson Cancer Center in Houston.

The federal government will spend about $62 million on ovarian cancer research this year. Although advocates have been very successful in lobbying for more funding in the last few years, the research funds devoted to ovarian cancer research are small when compared with another deadly women’s disease, breast cancer, which has a much higher profile.

“What the Lynne Cohen Foundation and other foundations like them do is they have much more freedom to support early projects,” says Mills, who says the government often funds large, established projects and that foundation money helps launch small, new studies. “They give us leverage to seek more funding.”

And then there are the sisters themselves, whose youth, energy and social connections--both in Los Angeles and in New York City--have brought fresh attention to an often-fatal disease that can strike younger women but typically affects those over age 50.

“Youth usually assumes immortality, except when they become wiser through personal tragedy,” observes Dr. Franco Muggia, who treated Lynne Cohen in Los Angeles and who is now an oncologist at the Kaplan Comprehensive Cancer Center in New York City.

By all accounts, the sisters had a good role model in their mother. Lynne Cohen, a vivacious, fun-loving person, was active in fund-raising efforts for her children’s schools and local charities. In 1995, two years after she was diagnosed with cancer, she helped actor Pierce Brosnan and an entertainment industry philanthropy raise funds for ovarian cancer research at the premiere of the movie “GoldenEye.” Brosnan, who starred in the film, lost his wife, Cassandra Harris, to ovarian cancer in 1991.

“Lynne had an engaging personality and was very friendly and interested in families--mine, our nurses’, others in the hospital,” says Muggia. “She was frightened about her disease, but not paralyzed.”

During her five-year fight with cancer, Lynne, who died at age 53, was never in remission. Instead, she fought for more time--first years, then months--with various chemotherapy regimens.

Relying on her husband, Bert, a private investor, to coordinate her medical care, Cohen went about her daily activities--never divulging the seriousness of her disease to her children.

“It only hit me . . . how ill she was when I would ask her how many more chemo sessions she had left,” recalls Whitney Rosenson, 30, Lynne’s daughter by her first marriage. “She’d say, three more, or some number. Then, after a while, she just started saying, ‘I don’t know.’ ”

When the family vacationed in Hawaii two weeks before her death, Lynne donned a bathing suit and sat by the pool with her daughters. “You wouldn’t know she was sick,” says Erin. “She was such a strong person.”

More than 1,000 people attended Lynne’s funeral, and donations to create the foundation poured in. But it takes more than the desire to honor a loved one’s memory to launch a successful foundation with staying power, says Pat Goldman, president of the Ovarian Cancer National Alliance, a consumer advocacy organization in Washington, D.C.

“It’s normal to want to come up with a memorial,” says Goldman. “But to keep a foundation going you have to have a real energy. Raising money takes a gigantic effort.”

Such effort--along with the sisters’ love of a good party--was on grand display at a foundation fund-raiser in New York’s TriBeCa neighborhood in May. Carefully cultivating a guest list of under-35 New Yorkers led to a rousing party of 600 people. After emotional speeches by the sisters, the guests took home a stylish workout shirt with the Lynne Cohen Foundation emblem--and, more important, of course, a better understanding of the disease. The event raised $62,000 for the foundation.

“We realized we should have our contemporaries involved in this, because part of our mission is to establish awareness about the disease in young people,” says Amy, 23, the youngest sister and president of the foundation.

Focusing on Preventive Measures

Ovarian cancer prevention can begin at a very young age. For example, taking birth control pills can dramatically reduce the chances of developing the disease in women at high risk. Women who are at high risk include those who have a personal or family history of breast, ovarian or colon cancer; carry the BRCA 1 or BRCA 2 gene mutations; and have never borne a child.

This month, as part of its push to focus on prevention, the foundation opened the Lynne Cohen High-Risk Clinic for Women’s Cancers at Bellevue. The clinic will provide the early detection blood test under investigation, called LPA, and other services to minority and indigent women that may be unavailable at many medical centers.

The sisters hope to provide $100,000 to launch a second high-risk clinic at the USC Norris Comprehensive Cancer Center in Los Angeles early next year. In the meantime, they’re also directing funds to detection and treatment of the disease.

For example, the foundation gave $100,000 to the Cleveland Clinic Taussig Cancer Center for further research on the LPA test, which might be suitable to screen women for early detection of the disease. So far, there is no reliable test to detect the cancer early. One screening test, called CA 125, is used but has a high error rate.

“Ovarian cancer is not like breast cancer, where you might feel a lump,” notes Erin. “It would be so revolutionary to be able to detect ovarian cancer early.”

The foundation also has helped fund several clinical trials of drugs to treat advanced cancer. One project, at USC, is focused on a compound called IM862, a nasal mist that has shown promise in slowing down the spread of advanced disease without the debilitating side effects common to chemotherapy.

“I’m most excited about the [nasal mist],” says Whitney, of the IM862 research. “I think my mom would have had a much easier time if she had had access to that.”

Each sister has a different pet project. But all view the foundation’s work through the prism of their late mother’s spirit. And they still wonder, at times, what she would have said if she were there to guide them.

They think she would approve of their most recent decision.

“We’ve come to a crossroads where we can stay a small, family foundation that gives some really nice-sized grants or take the lead and get bigger,” says Amy. “Erin and Whitney and I talked about it and decided, why not take this as far as we can?”