A Legacy of Compassion and Commitment

The Joan Scarangello Foundation to Conquer Lung Cancer

by Diana Price

Summer 2006

Roxanne Donovan does not hesitate when asked to describe her sister-in-law and closest friend, Joan Scarangello McNeive: “Joan was absolutely magnificent. She was passionately alive and present. She walked through the world with her shoulders back and her head held high. She reveled in the lives of her wide circle of family and friends.”

Joan was a runner, a lifelong New Yorker, a senior news writer at NBC, and a nonsmoker when she was diagnosed with Stage IV lung cancer in October 2001. She was 47 years old.

Roxanne laughs when she says, in further describing Joan, “Hallmark stock must have dipped the first year Joan wasn’t buying Mother’s Day cards. She spent more on Mother’s Day cards than anyone I know. Though she wasn’t a mother herself, she sent cards to every mother she knew in her life—to friends and relatives and anyone who had ever been like a mother to her. That’s the kind of person she was.

“And she was extremely healthy. She was one of those people that you hate because she would actually choose the piece of fruit over the chocolate cake for dessert. She was tall and lean and always ate carefully.”

That’s why, despite the fact that she had a family history of lung cancer—her mother had died of the disease 20 years earlier—and despite knowing what signs to look for, Joan’s diagnosis still came as a surprise. She had gone to the doctor with a persistent cough and, when the chest X-ray was clear, she was prescribed antibiotics. When the cough hadn’t cleared up six months later, her doctor ordered a CT scan, and that’s when she was diagnosed with lung cancer.

At the time of Joan’s diagnosis, she and her family were frustrated by the apparent vacuum of research that existed for lung cancer. It seemed that there had been no progress in the 20 years since Joan’s mother had battled the disease. Roxanne says, “When Joan’s mother was diagnosed and there were so few options for treatment and so little research being done, we thought, This must be a fluke. There will be progress soon. And then, when Joan was diagnosed and there was still no new research, no progress, we couldn’t believe it.”

Joan tried every available option as she researched her treatment, looking in every direction for some novel approach or emerging research, and in every direction she met a dead end.

Roxanne remembers that during this time, as she continued to research treatment options, her sister-in-law continued to live fully in each day she was granted. “She was incredibly happy. She quit her job and worked on her novel. She got married and had a huge wedding. She was full of life. A week before she died, she threw a birthday party for her husband.”

After Joan died, nine months after her diagnosis, her friends and family knew that they had to do something to make a difference—to fill the void in research and treatment options and to raise awareness about the disease. This committed group established the Joan Scarangello Foundation to Conquer Lung Cancer, or Joan’s Legacy. Their mission: funding innovative research and increasing awareness of the world’s leading cancer killer, with an

emphasis on nonsmoking-related lung cancer.

Joan’s Legacy has been largely funded by an annual fundraiser: the Strolling Supper with News and Blues, which last year attracted more than 500 attendees to New York City’s Times Square Studios (home of ABC’s Good Morning America) and raised more than $840,000 for lung cancer research.

Susan Mantel, executive director of Joan’s Legacy, describes the organization’s current fundraising strategy as increasingly collaborative. “In a challenge this big, the most efficient, effective way to make an impact is to work together. And increasingly, [we] have been approached by other groups who have faced a similar loss and believe in the strength of our approach to funding the best researchers out there.”

In the three years that the foundation has been awarding grants, it has distributed $1.3 million in research grants focused primarily on novel approaches to the treatment of lung cancer. Of that $1.3 million, $100,000 was due to the type of partnerships that Mantel describes—the co-funding came from the likeminded Thomas G. Labrecque Foundation and the LUNGevity Foundation. And this year commitments have already been made by the Thomas G. Labrecque Foundation and the Felice Lipit Jentis Memorial BAC Research Trust.

“I believe that it is really only by putting all of our voices together,” Mantel says, “that the full power of the lung cancer community will be felt.”

In addition to funding research, Joan’s Legacy is committed to raising awareness about lung cancer, and to that end it has created an annual Joanie Award, presented each November to honor Joan’s memory as a journalist and to recognize “exceptional journalism about lung cancer, women, and the disease, and/or about nonsmokers and lung cancer.”

Joan’s Legacy is also devoted to fighting the stigma attached to lung cancer. Roxanne recounts how hurtful it was for Joan to encounter the response she would often face after her diagnosis when “I’m so sorry” wasn’t always the first thing she would hear: “The first response would be, ‘How much did you smoke?’ or ‘When did you quit smoking?’ Never ‘I’m so sorry.’ The indignity, the hurtfulness of that response to the diagnosis is terrible. Nobody should need to feel ashamed of the disease. Nobody deserves lung cancer.”

In response to Joan’s experience—and to that of many other lung cancer patients, smokers and nonsmokers who have dealt with the stigma attached to the disease—the foundation felt it important to instill as one of its core values the principle that all patients with lung cancer deserve compassion and support, regardless of smoking status, and to operate from that place of compassion in all of the work that it does.

Indeed, it is compassion and commitment that come through when Roxanne speaks about the foundation’s work as it continues to honor Joan’s memory by raising funds and awareness. When she speaks about her sister-in-law and best friend, there is such obvious devotion and love present; and when she describes her continued commitment to finding a cure for lung cancer, the same passion is evident.

Roxanne admits that her work for Joan’s Legacy is, of course, extremely personal. “I have children, and I don’t want to be facing the same dearth of information in another 20 years with the next generation of Scarangellos. And I am of course working in honor of Joan’s memory. We couldn’t do anything for Joan when she was alive, and with this work I know that we’re making a difference.”

On a larger scale, Roxanne views the organization’s goal as much more far-reaching: find a cure for all the people in Joan’s position. “My inspiration, my goal, is to cure it and get out. I’m not interested in glossy newsletters. It’s all about the research.”

When asked what Joan’s Legacy can offer women diagnosed with lung cancer and their caregivers if they are facing a diagnosis today, Roxanne responds, “I would want them to know that progress is being made every minute, that someone is doing something, that we are working toward something, and that new answers are coming. I would want them to know that they are not facing the same dead end that we were facing when Joan was diagnosed.”

Ultimately, beyond the very considerable results that the foundation is generating through research and awareness campaigns, Joan’s Legacy has created something perhaps even more important: a legacy of hope for lung cancer patients and those who love them.

For more information about Joan’s Legacy,

visit www.joanslegacy.org

or call (212) 627-5500.

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