By Joe Levine

Among the many aphorisms that alumna Phyllis L. Kossoff has collected over the years (she calls them “hand holds,” suggesting a series of gripping points in a long and difficult climb) is one translated from the 17^th century Japanese poet Mizuta Masahide: Now that my house has burned down, I can see the moon.  

When their newborn daughter, Stephanie, failed to thrive, Kossoff and her husband, Burton, learned that she was afflicted with cystic fibrosis, a uniformly lethal genetic disease that at that time killed most children by the age of five. Stephanie died at 19, during her freshman year at Barnard. For Kossoff, the pain can seem as fresh as though the loss occurred yesterday. Yet along the way, her life began again.

“Better to light a candle than to rail against the darkness,” she said, paraphrasing the Chinese proverb, during a recent visit to campus. A petite, graceful woman, best known to the TC community for the policy lecture that bears her name (this spring’s iteration will feature New York City Public Schools Chancellor Carmen Fariña), she speaks softly and smiles often. “When Stephanie was born, so little was known about CF that there wasn’t even a chapter on it in the medical textbooks.  So we did what parents do. I did what mothers do.”

Part of what Kossoff did was struggle with the basic challenge of giving Stephanie and her younger brother, Mitchell, something approaching a normal life. Children with CF have to be kept apart from other kids who have colds and respiratory infections, so Kossoff took them to museums and other venues at off hours, and she kept both children out of school until Stephanie was ready for first grade.

“It was very tough on my son, and he was a very supportive and loving brother,” she says of Mitchell, who is now a practicing attorney in New York City.

At the same time, working with a small group of other parents and supported at every turn by Burton, Kossoff laid the groundwork for the creation of the national Cystic Fibrosis Foundation. Over the past 50 years, the organization has been extraordinarily successful in its mission to translate research into treatments for patients, whose bodies produce an unusually thick form of mucous that clogs the lungs and blocks the digestive system.

As a direct result of the foundation’s efforts, the median lifespan for those with CF has risen to over 40, with some people living into their 60s. Antibiotics and mucous thinners have dramatically reduced the time patients spend in the hospital. Women with CF can now more easily conceive and bear children. Gene-protein therapy can correct the basic defect in about four percent of patients, and new research, including a gene splicing technique recently developed in the Netherlands, has raised hopes for similar results against more common mutations of CF.

Kossoff herself founded and served as President of the New York chapter of the Cystic Fibrosis Foundation, assisting in the creation of diagnostic and treatment centers around the state that raised public awareness of CF and helped researchers accurately determine the incidence of the disorder. (About 30,000 people in the United States have it and about 70,000 worldwide.) Working with state officials such as Senator Jacob Javits and New York City Mayor Robert Wagner, she spearheaded a four-year campaign that succeeded in winning state aid for inpatient and outpatient care.

“As with any effort that involves working with government, you have to take the attitude of We will do this,” she says of her work. “And you have to harness all the resources at your disposal. There was no internet back then, but New York had a lot of newspapers. We got the Ad Council to run spots on the radio. We went door-to-door, and we found people in apartment buildings to act as building captains who would circulate gift request envelopes. I don’t think that’s even allowed anymore.”   

Later in Kossoff’s career, she worked with the CF Association of New York to establish the first college scholarships for young people with CF.

“We were able to do that because, for the first time, there actually was a young adult CF population,” she says. “One young man who received a scholarship told his doctor that it was the turning point in his life, because it meant that someone out there with judgment believed that he really had a future.”

Looking back now, Kossoff says she can’t quite imagine how she and the other parents she worked with accomplished so much.

“We were young and earnest, and people responded to us with great kindness,” she says. “When we didn’t know something, someone always showed us how. And we were so fortunate to have a dedicated cadre of volunteers who didn’t even have a personal association with cystic fibrosis. They were just extraordinary people who felt so badly for these children and who found real joy in working to extend their lives.  As a result, I’ve come to believe that there is far more goodness in the world than selfishness and greed. Given the chance, most people want to do good.”

Kossoff’s learning curve was steep, though you’d never know it to listen to her rattle off the names of genetic mutations and medical procedures. Still, she had a few role models. When her father, Herman Lostfogel, a manufacturers’ representative for paper goods, died when she was two years old, her mother, Fan, a high school graduate with limited work experience, stepped in and took over his job.

“She was the first female sales rep in the industry, and a lot of the men didn’t want to deal with her,” she says. “But she kept stopping by their offices and asking after their families, and eventually most of them came around. She was a very intelligent woman. I learned from her that ‘No’ is just the beginning of a conversation. Also that tomorrow is too late, and that what needs to be done can be done.”

Kossoff herself attended Hunter College at 16, graduated three years later and was teaching in the New York City school system by the time she was 20. She later earned her TC master’s degree in health and physical education and taught “manners and morals” to junior high school girls in East Harlem. Teaching occupied a relatively brief chapter in her life, but the experience stuck: ten years ago, after ”retiring” from her work with CF, she decided to refocus her energies on higher education. She served initially as a member of TC’s Alumni Council and since then as a member of the President’s Advisory Council. And having already established a lecture series on CF at what was then Babies Hospital (now Morgan Stanley Children's Hospital of New York-Presbyterian, part of Columbia Medical Center), she hit upon the idea of endowing scholarships and lectures at Barnard, in her daughter’s name, at Baruch College, in her husband’s (he was an alumnus and trustee) and at Hunter and TC in her own.

“I like programs, not plaques,” says Kossoff, who in 2004 created and has since generously supported the Phyllis and Burton Kossoff Scholarship Fund at TC, which has so far supported 10 students in the College’s Department of Human Development. (The current Kossoff Scholar, Kalina Gjicali, is a second-year master’s degree student in Cognitive studies & Education.)  “I guess I’ve become results-oriented because of CF.”

Picking a topic for the programs at Baruch and Barnard was easy – business leadership for her husband’s lecture and early childhood education for her daughter’s scholarship (“because children loved her”) – but she wasn’t sure what the focus should be at TC until she sat down for lunch with Sharon Lynn Kagan, the College’s Virginia and Leonard Marx Professor of Early Childhood and Family Policy.

“She explained the need to have evidence-based, data-driven research translated into policy that then becomes mainstreamed into the education system,” she says. “And I thought, that’s where I want to be – policy – because that comes nearest to achieving a tangible result.”

At TC, the Phyllis L. Kossoff lecture has taken the form of a live debate between the education advisors of the two Presidential nominees in fall 2012; a major policy address by U.S. Secretary of Education Arne Duncan in 2009; a roundtable discussion that featured New York State Regents Chancellor Merryl Tisch (Ed.D.’05) and state education commissioner David Steiner; and policy addresses by two New York City public school chancellors – Dennis Walcott in 2011 and former TC Cahn Fellow Carmen Fariña this spring.

“I’m honored and pleased to hear that the Kossoff Lecture has been credited with helping to establish TC as the nation’s premier address for the national conversation on education,” she says. “But beyond that, I’ve just gotten so much joy out of meeting these people and being uplifted by their personalities and their goodness.”  

Kossoff also maintains a pioneering lecture at Hunter’s Roosevelt House Public Policy Institute.

For all that Kossoff has accomplished, it upsets her when people tell her how proud she must be of her legacy in fighting CF.

“If there’s a legacy, it’s my daughter’s legacy,” she says. “After she died, I cut back working in CF for a few years. But then you think, ‘She was my child, and if I cared for her and loved her when she was alive, why would I abandon her in death?’ So I continued on to help others – to help others to validate her life. That’s what’s important, and it’s the spirit one finds in the CF Foundation.”

Still, she’s not immune to the pleasure of recognition, especially when it comes from the right quarter. Kossoff fondly recalls a note from one of her former students in East Harlem.

“She was graduating from college, and she said she wanted to thank me because she knew how much I cared and how much her success would mean to me.” Kossoff smiled. “A note like that is pretty special.”

Published Thursday, Apr. 3, 2014