How a Mother’s Cause Became a Multimillion-Dollar Charity

No. 134

By Debra E. Blum

Doris F. Tulcin traces her penchant for fund raising to 1957, four years after

her infant daughter was diagnosed with cystic fibrosis, a disease that attacks the lungs and pancreas and usually leads to premature death.

At the time, Ms. Tulcin was hosting a luncheon for 300 people at her parents’ home in Greenwich, Conn., to raise money for a new charity she had helped create with her father, known as the National Cystic Fibrosis Research Foundation. Just as she was ready to show a film explaining the disease and the organization’s mission, the movie projector broke.

Ms. Tulcin quickly invited a scientist at the event who was doing pioneering work in the field to speak to the crowd. But it turned out that the scientist’s thick Italian accent made it hard for him to be understood. When he finished his presentation, Ms. Tulcin decided to speak herself.

“I didn’t have a choice really,” says Ms. Tulcin, explaining that the governor of Connecticut at the time, Abraham Ribicoff, was scheduled to talk next to the audience and that he had been counting on the film to help shape his remarks.

When it was the governor’s turn to talk, he “ended up giving an inspiring speech about the disease and the need to fund raise for it,” Ms. Tulcin recalls, “and I realized that he was reflecting my words. I realized that what I said must have been inspiring.”

Five Decades of Work

Ms. Tulcin, now a vibrant and agile 76-year-old, says it feels as if she hasn’t stopped talking about cystic fibrosis and the need to find its cure since then. Her fund-raising leadership has been a key reason that the group has become one of the most successful charities in the country, according to people within the organization. Last year, the Cystic Fibrosis Foundation, as the group is known today, raised $99.5-million, placing it at No. 134 on The Chronicle’s ranking of the 400 organizations that raise the most private money.

Ms. Tulcin has organized or spoken at thousands of fund-raising events over the past five decades, such as fashion shows, theater trips, and golf tournaments. Serving as national president from 1976 to 1982 of the group she helped found, she was the organization’s leading volunteer and spokeswoman, here in the United States and at conferences around the world. She has served on advisory councils for the National Institutes of Health and other health and research groups. She has talked with presidents about her cause, and lobbied state officials and members of Congress.

And all of it, she says, has been about asking for money and support.

Finding a Gene

Among her most important accomplishments: Ms. Tulcin directed a fund-raising campaign in the 1980s, raising more than $25-million to support research that led, in 1989, to a huge scientific advance: the discovery of the cystic-fibrosis gene.

In 1995, Ms. Tulcin became executive director of the Greater New York Chapter of the Cystic Fibrosis Foundation, a job from which she says she may retire at the end of next year.

The Greater New York Chapter, which is based here but has two other offices in the New York City area, raises about $7-million annually, making it the charity’s top fund-raising chapter most years. Ms. Tulcin says she usually brings in a couple of hundred thousand dollars in big gifts from an end-of-year letter she sends to key supporters. The rest of the chapter’s income, she says, comes from the roughly 60 events the three offices stage each year.

As she flips through five scrapbooks filled with old newspaper clippings about the events she has organized, Ms. Tulcin says, “The formula for fund raising has not changed over the years. You ask people for money. That’s it.”

She acknowledges that she had a leg up in that endeavor from the start. Her father, George Frankel, ran a successful oil business, and she grew up in privilege among other wealthy people, many of whom would later become early donors to the Cystic Fibrosis Foundation.

Her parents’ next-door neighbors, the Hirshhorns, who later moved much of their art collection to an eponymous museum in Washington, allowed Ms. Tulcin to run two rare house-and-garden tours of their estate to raise money for the charity. Ms. Tulcin estimates that her own family has given at least $3-million to the group over the years.

“My family’s connections and money were certainly crucial in the beginning,” she says, noting that her father paid for the charity’s first office headquarters in Philadelphia, then New York. “But the foundation is so much bigger than that now. It is a professional health and science organization.”

Research Support

The Cystic Fibrosis Foundation, in Bethesda, Md., together with its 80 chapters around the country, raises money to pay for medical-care programs, research and clinical centers, advocacy work, and efforts to educate people about the disease. The charity has particularly made its mark in pursuing innovative research, and in bringing together physicians, patients, and donors with people in medicine, science, and the pharmaceutical and biotechnology industries to help more quickly convert research into treatments for people with the disease.

Since the discovery of the gene that, when defective, causes cystic fibrosis, the charity has supported promising gene-therapy research. It has also been behind the introduction of drugs specially designed for cystic-fibrosis patients, and, among other programs, has created a network of patients willing to participate in clinical trials of drugs and other therapies.

Over the years, the average life span of those with cystic fibrosis has increased as understanding of the disease and treatments for it have improved. But the prospects are still bleak: Half of all those with the disease die before they are 33 years old, often of lung infections.

About 30,000 Americans have cystic fibrosis. By contrast, 18 million people in this country are believed to have diabetes, and millions more have cancer — or will have it in their lifetimes. The Cystic Fibrosis Foundation, then, faces a challenge among health charities to raise money for and awareness of a lesser-known and less-prevalent disease.

But Ms. Tulcin balks at the notion of cystic fibrosis as a small disease — a term even foundation officials use — saying she vacillates between ignoring and challenging the statistics about how many people are afflicted.

“There are many, many more people who just aren’t diagnosed at all or are being treated for other conditions when what they really have is cystic fibrosis,” she says.

“But,” she says, as she pauses and fixes a determined glare, “what do the numbers mean when we have a fatal disease that we know with the right money and science we can cure?”

What the Money Does

C. Richard Mattingly, executive vice president of the Cystic Fibrosis Foundation, says the group’s drive, focus, and track record have led to its relative fund-raising success.

“We can say, This is the exact science your money will pay for,” he says. “We can say, We went after the gene, that was revolutionary science, and we found it, and now we are just as committed to the science that will get us to the next step.”

Unlike many charities among the Philanthropy 400 that focus on winning big cash or estate gifts, the Cystic Fibrosis Foundation has always relied heavily on donations from special events and on modest direct-mail contributions. Typically about 65 percent of the group’s money each year comes from event revenue, including the proceeds from an annual 10-kilometer walk, called Great Strides. Last year, Great Strides, held in 550 locations around the country, raised nearly $21-million.

Another roughly 20 percent of the organization’s donation income each year comes from responses to its direct-mail appeals.

“They have one of the best small-gifts programs in the country,” says Bruce Flessner, a Minneapolis fund-raising consultant.

But Mr. Mattingly, the charity’s top fund-raising official, says that while the organization will stay committed to such gifts through its event and direct-mail fund-raising efforts, it would like to grow the proportion of dollars it receives in major gifts. Such donations now annually account for no more than 10 percent of the charity’s gift revenue. The Cystic Fibrosis Foundation’s goal, Mr. Mattingly says, is to double that share within the next several years.

The charity plans to introduce a new fund-raising campaign by early next year to seek up to $200-million over 10 years. Also beginning next year, the group plans to more heavily promote planned gifts, such as trusts and bequests.

“There has always been an immediacy to our fund raising and that has served us well because we have bought a lot of science and a lot of results,” Mr. Mattingly says. “We’d like to go out of business tomorrow. But as we near our 50th anniversary, we understand it is incumbent upon us to pause and look at all our opportunities, like planned giving.”

Ms. Tulcin says she supports the charity’s new efforts, but she personally is not much interested in planned gifts.

“I want the money now,” she says, explaining that she feels the same sense of urgency she felt the day her daughter was diagnosed with cystic fibrosis. At that time, most children with the disease were not expected to live past age 5.

Ann Tulcin Kates, Ms. Tulcin’s daughter, is now 51 years old.

Says Ms. Tulcin: “I don’t say she has beaten the odds because of the foundation, although the research and the knowledge and the support the foundation has made possible are a factor in improving everyone’s odds. But I do know that I could not have done anything else with my life but work for this cause.”

THE MAKING OF A TOP FUND RAISER

Doris F. Tulcin, executive director of the Cystic Fibrosis Foundation’s Greater New York Chapter

EDUCATION: Received a bachelor’s of arts in 1949 from Cedar Crest College, Allentown, Pa.

PREVIOUS EMPLOYMENT AND VOLUNTEER ROLES: Development officer, Greater New York Chapter of the Cystic Fibrosis Foundation, 1991-95; part-time fund-raising consultant, Cystic Fibrosis Foundation, 1988-91; volunteer at the Cystic Fibrosis Foundation, including three two-year terms as national president, 1955-88.

MOST IMPORTANT LESSON LEARNED: “Fund raising can be very crass and very hard, and people can go after you. You have to be kind and gentle in your approach, not look at people like it is all about how much and how often they can give. I am not bloodthirsty. I value who these people are. You have to care about what you are doing and know what you need to accomplish, but you have to be really careful with people, with their friendship, with their support.”