Voicing a Tenor of Hope
Karen Spataro Feb 01, 2016
Mary Beth Gadus has been battling metastatic breast cancer for 27 years. Think about that for a few seconds. Allow it to sink in.
Now imagine that during that time, she’s launched one of the most collaborative fundraising initiatives at the Indiana University Melvin and Bren Simon Cancer Center: 100 Voices of Hope. The campaign hit the cumulative $1 million mark in December—the ultimate way to pay it forward for everyone affected by this devastating disease.
First diagnosed in 1988, at age 36, Gadus has been in remission three times. Her method of treatment has evolved from one option that everyone diagnosed with breast cancer in the 1980s received—“chemical warfare,” in her words—to increasingly targeted therapy. As research advanced and the way we thought about cancer changed, so did Gadus’ treatment each time she faced a recurrence. She attributes her survival to new options made available due to years of hard work by cancer researchers.
Gadus has been fighting for her life for so long that today she finds herself in a brave new world of precision genomics, a treatment method rooted in the Human Genome Project that uses a cancer patient’s genetic profile to fight the specific mutations that drive a tumor.
“I believe there is a solution out there. Precision genomics is incredible, and it will be the way all are treated in the future, but it is also the area of cancer research with the biggest need for funding,” Gadus said.
Grants are available but the bulk of them come from large federal organizations like the National Institutes of Health and the National Cancer Institute, which won’t dole out money to unproven ideas, no matter how much promise they might show. And flat budgets, coupled with increases in the cost of research, have further shrunk the pool of money for cancer research.
Gadus’ will to live—and to see other women stricken with breast cancer live—prompted her to monitor the efforts of cancer researchers such as Harvard scientist Judah Folkman, whose pioneering work in the area of inhibiting tumor angiogenesis led to the development of drugs that help cut off the blood supply to tumors. Gadus recalls going to hear the now-deceased Folkman speak and being inspired by the incredible story of how his idea was rejected 25 times—“he used the rejection letters as wallpaper,” she said—before the New England Journal of Medicine finally published his findings in 1971.
“They scoffed at his idea but it turned out to be the basis for many drugs that stop tumors from growing,” she said. “How many people could have been saved if someone had believed in his idea? Cancer researchers are having ideas, but they can’t get funding. So these ideas just sit there.”
The concept of “sitting there” does not seem to have a place in Gadus’ worldview. So in 2008, she founded 100 Voices of Hope, a program at the IU Simon Cancer Center that funds, via grassroots philanthropy, research ideas that would otherwise languish. Initially, she asked friends, family and fellow cancer survivors to help meet her fundraising goal of $100,000 to aid the development of what she calls “hunches”—out-of-the-box ideas, like Folkman’s decades earlier—that could very well yield incredible results if only given the chance.
Not even a decade later, 100 Voices of Hope has raised $1 million, helping IU Simon Cancer Center researchers make incredible progress on several fronts. During her initial campaign, she sought $1,000 each from 100 people—thus the name of the organization. However, there are many donors who contribute lesser donations, known as “Whispers,” and greater ones, known as “Shouts.”
But what’s truly unique about 100 Voices of Hope is the level of engagement and access donors enjoy. In contrast with most traditional philanthropy, people who donate to 100 Voices of Hope can experience exactly how each and every dollar they contribute gets allocated and applied.
“I believe there is a solution out there. Precision genomics is incredible, and it will be the way all are treated in the future, but it is also the area of cancer research with the biggest need for funding,” Gadus said.
“It’s like American Idol,” Gadus said of the process by which hunch proposals are selected. Cancer researchers present three ideas to donors at an annual meeting, and the winning hunch receives $100,000 in funding.
Once a hunch is selected for funding, donors connect directly with the research team via meetings and progress reports throughout the year.
“The Voices have unprecedented access to the research and researchers,” Gadus said. “If you give to out-of-state organizations, you often don’t know what’s happening with your money.”
One of the most successful hunches to date came from Hari Nakshatri, MD, co-director of the cancer center’s breast cancer program and the Marian J. Morrison Professor of Breast Cancer Research at the IU School of Medicine. Dr. Nakshatri and his co-director, Dr. Kathy Miller, serve as 100 Voices of Hope’s research leaders. Their roles include screening all hunches before being presented to donors to ensure scientific validity.
Nakshatri was able to identify a potential biomarker—or red flag—for recurrent breast cancer in circulating blood. His discovery led to a $400,000 grant from the National Cancer Institute and a $1.2 million Department of Defense grant, which in turn allowed him to patent his biomarker.
Nakshatri’s success brings up another key component of the 100 Voices of Hope model: how it serves as a springboard for additional funding. The funded “hunches” have led to an additional $4.5 million in grants. What’s more, nine grants are in various stages of submission, five papers have been published, and a clinical trial is on the horizon thanks to the grassroots generosity of donors.
Last year, the organization received a record number of hunches from researchers. The winning hunch for 2015 is a collaboration with Purdue University that blends the biological expertise from IU and the mechanical expertise from Purdue. Researchers are trying to develop a cell shredder that circulates in the blood stream and destroys migrating cancer cells that lead to metastasis.
Gadus speaks with great excitement and enthusiasm about the big ideas her efforts are enabling—“philanthropy will one day cause breakthroughs,” she avows—but when you’ve battled cancer on and off for nearly three decades, it’s the smaller, fleeting, more personal moments that tend to leave the most enduring impressions.
“My mother-in-law died from breast cancer before we were married; I only knew her for a few months,” Gadus recalled. “At our wedding, the loss of her two years earlier brought tears to everyone’s eyes.”
“When I got breast cancer, I said I will do whatever it takes to be at my sons’ weddings, Gadus said. (She and her husband have two sons: Michael, 30, and Matthew, 28.) “They have always known a life with a mother who has breast cancer. They’ve lived with it their entire lives. I’ve had the gift of seeing them grow into two kind and successful men. And I’ve enjoyed two college graduations, a beautiful wedding, and we just celebrated the birth of our first grandson.”
When it comes to hope, Gadus’ continues to grow. “Never, ever, did I ever think I’d live to see all of this. It’s pretty special.”
To learn more about how you can support 100 Voices of Hope and breast cancer research, contact Lizzie Conkle at econkle@iu.edu or 317.278.2120.