Member Profiles

By Jimmy Tomlin

It’s a well-known fact that most performers do not like to be upstaged.  So nearly a decade ago, after a lung cancer diagnosis had threatened to upstage Hildy Grossman, the Boston psychologist—who also happens to bePhoto2 an accomplished jazz singer—decided to turn the tables on the deadly disease. The result was Upstage Lung Cancer, a nonprofit organization that uses music and musical theater to fight lung cancer. Grossman founded the organization in 2008.

“I didn’t know anything about advisory boards or fundraising or anything like that,” she says with a chuckle, “but I knew I wanted to do something. I told a friend, ‘The one thing I know I can do is put on a great show—maybe that would be a way to raise awareness and raise money for lung cancer research.’ So I got two friends to help me, and off we went.”

Off they went, indeed. Since 2011, Upstage Lung Cancer concerts have raised more than $1.8 million for the cause. Just as importantly, the organization has helped shine a bright spotlight on three primary issues—the need for more research dollars, the destigmatization of lung cancer, and the importance of early detection.

Grossman knows she was fortunate, because her lung cancer—which was detected at an early stage—happened purely by accident. After a fall on her basement stairs in 2006, she underwent an MRI to see if she had a pinched nerve in her back.

“I didn’t have a pinched nerve, but through the MRI, I was diagnosed with two very tiny Stage 1a tumors,” she says. “It was miraculous. Unfortunately, most lung cancers are found late in the game, when they’re not curable, so I was very lucky. They did surgery, and I’ve had no recurrence. I just felt so lucky—why was I spared?”

Before long, Grossman began to realize maybe she had been spared so she could help others. That realization led her to establish Upstage Lung Cancer, through which she and other musical volunteers use their lungs to make music in the name of, well, upstaging lung cancer. The organization sponsors two major concerts a year—one in the fall and one in the spring—to raise money for lung cancer research.

Photo1Some of the concerts feature the music of a musician, composer or lyricist who died of lung cancer. For example, concerts have honored the likes of Dean Martin, Rosemary Clooney, Nat King Cole, lyricist Alan Jay Lerner and songwriter Frank Loesser, all of whom died of lung cancer.

This past spring’s concert, titled “Sing Out! To Upstage Lung Cancer,” featured a number of different performing groups presenting a variety of music. The “Sing Out!” concert was in collaboration with the Bonnie J. Addario Lung Cancer Foundation and the Dana-Farber Cancer Institute. Proceeds benefit the Young Lung Genome Project, a study looking at the genomic profiles of young people diagnosed with lung cancer.

This fall’s concert, held in collaboration with another nonprofit, the LUNGevity Foundation, features Ella Fitzgerald, First Lady of Song. The concert will be held at the Arsenal Center for the Arts, in the Charles Mosesian Theater, Watertown, MA. (For details about upcoming concerts, including ticket pricing, visit Upstagelungcancer.org.)

“Everybody is a professional,” Grossman says. “We have an award-winning director, singers and actors, and our choreographer. They’ve all won major theatrical awards, and they’re all well-known in the Boston area. And all of them have been touched by lung cancer in one way or another, either in their family or a friend, so they all donate their time and talent and generosity.”

The organization also hosts a series of house concerts, which are small, intimate musical performances held in people’s homes.

“People open up their homes and invite friends over,” Grossman explains. “We’ll bring in the music and have a reception, and we always get an expert to come and talk a little bit about lung cancer.”

The nonprofit’s newest event is one called Yoga To Upstage Lung Cancer, a 75-minute yoga class—again, withPhoto3 uplifting music—taught by lung cancer survivor Janet McCarthy, who also serves on the organization’s board of directors.

“This is something that really means a lot to me,” says McCarthy, who is not only a lung cancer survivor, but whose husband and sister-in-law both died of lung cancer. “When I heard about Upstage Lung Cancer, I knew it was something I wanted to help with and be a part of.”

Grossman says people such as McCarthy, who have given their time and talents to Upstage Lung Cancer, have been a blessing.

“Nobody would think having lung cancer is a blessing,” she says, “but it’s really enriched my life through the people I’ve met and the extraordinary courage I’ve witnessed. I’m very grateful for these extraordinary people who have come into my life.”

By Jimmy Tomlin

Kim Norris remembers the days when lung cancer was considered the redheaded stepchildof the cancer community. Underfunded and under-Jim-&-Kim-DATR-2016researched, lung cancer took a back seat to almost every other form of cancer, and Norris—president and co-founder of the Lung Cancer Foundation of America—took exception to what she saw.

“We would go to these big research meetings, and the lung cancer research group would be back in a small room somewhere, while all the others would be in these big halls with hundreds of people,” recalls Norris, a successful management consultant. “Now, lung cancer is in those giant halls with hundreds of people, which is good, because you want those new, up-and-coming researchers—you want them to pick lung cancer, and right now, it’s becoming the hot ticket in the research world. Luckily, lung cancer has had some major breakthroughs, so this is the place to be.”

That’s a far cry from 1999, when the death of her husband, Roy, to lung cancer led Norris into a life of advocacy. She and two lung cancer survivors—David Sturges (a 13-year survivor) and Lori Monroe (who survived 13 years until her death two years ago)—met when they were patient advocates for the NCI’s Lung SPORE (Specialized Program of Research Excellence), trying to address the lack of sufficient funding for lung cancer research. They agreed the insufficient funding contributed mightily to the poor survival rate for lung cancer, and as a result they joined forces to establish the Lung Cancer Foundation of America.

“Our motivation was to fund transformative lung cancer research, because we were tired of seeing lung cancer researchers having to fight for every penny just so they could keep their labs open,” Norris says.

That meant spending a lot of time in Washington, D.C., bending the ears of senators and members of Congress as they lobbied to raise lung cancer’s national profile, underscoring the need for more funding. They spent long hours sitting on panels and committees, and attending research meetings.

ASCO 2016 - 20160605 - SU2CAccording to Norris, the organization’s three-pronged mission includes raising funds for research, increasing awareness of the disparity between funding for lung cancer and the disease’s poor survival rate, and serving as a liaison between lung cancer researchers and patients.

“We feel our niche is a little narrower than a lot of (advocacy organizations),” Norris explains. “We don’t do patient support. A lot of organizations do a brilliant job of that, but we try to do patient education—we try to be a liaison between the lung cancer research community and the lung cancer patient community.”

The organization’s website (LCFAmerica.org) includes a section for patients in which top lung cancer researchers answer a wide variety of questions: Do I need a second opinion? What are the latest treatments available besides chemotherapy and radiation? What do I need to know about genetic mutation testing? What do I need to know about clinical trials?

One obstacle Norris encounters frequently is an age-old obstacle that still hasn’t gone away yet—the stigma of lung cancer.

“After all the years I’ve been doing this, now I’m finally getting people telling me that lung cancer is not necessarily caused by smoking,” Norris says. “Before, when I told people about my husband having lung cancer, the first question out of anybody’s mouth was, ‘Did he smoke?’ I wanted to say, ‘What difference does it make? Thanks for the empathy, compassion and support.’ I guess we’re slowly getting there, but the stigma is still pretty prevalent, and that raises a challenge in fundraising.”

The good news, though, is that great strides are being made in the battle against lung cancer—strides that should continue as long as the increase in funding continues.

“I am blown away by the progress that’s been made,” Norris says. “When we first started, we were trying to talk about hope when there wasn’t much hope. And now, our cup of hope runneth over.”

She points to her own family’s experience with lung cancer nearly 20 years ago to show how much progress has been made.

“When my husband was going through this, the only treatments available were chemo and radiation,” she says. “He went through five clinical trials, and some of them extended his life a little bit, but not much. But now, it’s almost hard to keep up with all of the advancements, which is exciting. Now there’s targeted therapy, immunotherapy, stem cell therapies, liquid biopsies—all of these will have a dramatic impact on the lives of lung cancer patients.”

By Jimmy Tomlin

When Whitney Spagnola lost a dear friend to lung cancer nine years agoBonn_Addario, the experience opened her eyes—and she, in turn, opened her heart.
“She was only 45 at the time, and she had been very healthy and leading a life very much like mine, raising young children,” Spagnola recalls of her late friend, Liane Glave. “Then she was diagnosed with lung cancer, and in a very short period of time she lost her life, and it changed her family’s life forever.”

The experience changed Spagnola’s life, too, leaving a gaping hole in her heart that needed mending.

“I felt like I needed to do something for my own healing,” she says.

That’s how Spagnola, of Los Gatos, California, soon found herself volunteering with the Bonnie J. Addario Lung Cancer Foundation in nearby San Carlos. Established in 2006 by lung cancer survivor Bonnie Addario—who overcame a grim prognosis and survived the disease—the foundation quickly became an important part of Spagnola’s life.

“Someone introduced me to Bonnie,” she says, “and when you meet Bonnie, you just instantly fall in love with her. She’s real and personal, and she has so much compassion and love that you want to be a part of what she’s doing. I wanted to jump in and help, so I got involved—I became one of her soldiers.”

Since then, Spagnola has lost another close person to the disease, family friend King Lamadora, which she says “further entrenched me in trying to help the Addario Lung Cancer Foundation.”

Spagnola has embraced the foundation’s mission of increasing lung cancer’s patient survival rate—a mere 17 percent—and making it a chronically managed disease by 2023. To do that, she says, more research dollars are needed—and that likely won’t happen at a significant level until the stigma of lung cancer can be erased or at least diminished, she explains.

“If lung cancer is the number-one cancer killer“—which it is—“then why is it the least government funded cancer?” she asks. “One likely answer is that people see lung cancer as a smoker’s disease, but we’re learning that’s not the case at all.”

Anyone can get lung cancer, she emphasizes. In fact, nearly two-thirds of newly diagnosed lung cancer patients either quit smoking decades ago or never smoked to begin with. And that’s one important task the Addario Lung Cancer Foundation has undertaken—to dispel the myth that people who get lung cancer bring it on themselves by smoking.

One way the foundation does this, Spagnola points out, is through Jill’s Legacy, an arm of the foundation dedicated to the memory of University of California Berkeley student and athlete Jill Costello, who—despite never having smoked—died of lung cancer in 2010, at the young age of 22.

Whitney-and-Liane“We’ve got a whole advisory group of young professionals fighting this disease,” Spagnola says of the Jill’s Legacy board, each member of which is a young professional personally touched by lung cancer. “As more of these types of things happen, the stigma of lung cancer has to begin to diminish.”

The good news? Spagnola says that shift in perception is already taking place.

“I think there’s been a significant increase in awareness,” she says. “We can only hope that funding will start to increase because of that.”

In the meantime, in addition to being one of the foundation’s most outspoken advocates, Spagnola has served on its board of directors since 2007, and she organizes a large team of walkers for an annual fundraising walk in San Francisco. To date, the foundation has raised nearly $30 million for lung cancer research and related programs.

“That’s been my biggest area of involvement, the fundraising and raising awareness,” Spagnola says.

She’s made such a difference, in fact, that Addario—the tireless, passionate lung cancer survivor who inspired Spagnola to join her foundation’s fight—now finds herself equally inspired by Spagnola.

“Whitney has taken on our passion to make lung cancer a chronically managed disease by 2023 as her own,” Addario says. “Every chance she gets, she includes the unmet needs in lung cancer in appropriate conversations and arenas. She doesn’t just read our financials in board meetings — she involves herself in our fundraising and awareness, as well. She is an inspiration to me.”

For more information about the Bonnie J. Addario Lung Cancer Foundation and its programs, visit www.LungCancerFoundation.org.