The journey started in the gym at West Springfield High School in 2004. The rookie coach of the girls volleyball team wept as he told his players he was struggling not only with teaching the sport but also with his mother’s recent diagnosis of Stage 4 breast cancer, the deadliest stage. The girls were speechless, stunned by Rick Dunetz’s raw display of emotion.
But they rallied around the coach in an electrifying run to the district championship, galvanized by his mother’s first appearance at the title game. Dunetz was struck by how the players and the patient fed off each other: The team’s underdog winning streak, he said, seemingly inspired his mother to keep fighting cancer.
“If the players could do the same thing they did for my mother,” Dunetz said he remembered thinking at the time, “then they could inspire other people to fight this disease as well.”
So in 2005, the coach created the Side-Out Foundation, a nonprofit group to raise money for treatment of metastatic breast cancer, the kind his mother suffered from and the least studied stage of the disease. He contacted other volleyball coaches around the country, thinking their players might have the same motivation and energy as his own. Now, about 1,000 girls’ volleyball teams stage “Dig Pink” fundraising rallies each year, which net the Side-Out Foundation about $1.5 million annually. Dunetz’s ultimate goal is to not only prolong the lives of breast cancer patients but also possibly change a metastatic disease from a death sentence to a chronic, survivable condition.
But his activism didn’t end there. Dunetz connected with, and began directly funding, researchers at George Mason University and the Mayo Clinic who were looking to pioneer personalized treatments to attack tumors and prolong lives. The result: a scientific approach named after Dunetz’s foundation, “the Side-Out Protocol,” which has had a significant effect in slowing the progression of tumors in its first clinical trial.
“No other trial in the world is using this combined approach,” said Emanuel F. Petricoin, co-director of the Center for Applied Proteomics and Molecular Medicine at George Mason’s Manassas campus. “The Side-Out Foundation trial for metastatic breast cancer is truly one of the cutting edge personalized cancer therapy trials in the entire world, and one of the central pieces of the technologies used in the trial was invented and implemented here at George Mason.”
The first set of data was gathered from a trial with 25 breast cancer patients and published in September by a team of oncologists and microbiologists. The pilot study involved both genomics and proteomics — the analysis of proteins in cells — after a tumor biopsy to determine the most effective treatment for an individual tumor. Early results showed promise for slowing down the growth of metastasized tumors, the study reported.
“We’re doing something that’s significant and identifiable in this disease,” Dunetz, 44, said, “and it’s all being funded by our sport. We wanted our community to have ownership of something, and we did this. We own it. Our sport owns the data from it.”
Dunetz’s combination of fundraising rallies and innovative cancer research could also be a game changer for nonprofit activism. Rather than raising money for general research on a large scale, Side-Out is targeting a specific project for a specific stage of a disease, which Dunetz said is not widely done in the nonprofit world.
Dig Pink has the potential to become much larger and have an even greater impact, Dunetz said. Between 900 and 1,200 teams hold rallies each year, but Dunetz estimates there are more than 26,000 middle and high school volleyball teams and perhaps 30,000 club volleyball teams nationwide that could join in. Side-Out hopes to get more clubs involved, and for those teams to make Dig Pink an annual tradition once they have launched it, in order to raise more money to enable more patients to join the Side-Out Protocol study and receive the expensive drug treatments prescribed by the study’s doctors.
The name “Side-Out” comes from the volleyball term for having the serve, or having control and the ability to score, Dunetz said. The name Dig Pink was a friend’s inspiration, combining the term for diving to save a ball and the color associated with breast cancer research.
“I can’t even begin to explain how special the [Dig Pink] night is,” said Ellen Hawks, who coordinates theactivities at Giles High School in Pearisburg, Va. In addition to allowing residents to serve the ball across the net into hula hoops filled with prizes or honoring a survivor each year or selling nachos at the food stand, “it’s about teaching [the students] to be good citizens. I just love how the whole school comes together,” Hawks said.
The program also caught the attention of former local television reporter Mike Walter, who first covered the West Springfield volleyball team’s run 10 years ago. He has now produced a short film, “The Side-Out Story: Conquering Cancer on the Court.” The film debuted last month at a film festival in Los Angeles and won the audience award for best documentary short.
Dunetz and his father, Bryant Dunetz, knew nothing about proteomics or fundraising or even volleyball when they embarked on this venture. Both were in the business and technology world in the late 1990s when Gloria Dunetz, Rick’s mother and Bryant’s wife, was first diagnosed with breast cancer.
The cancer was caught early, Rick Dunetz said, and Gloria Dunetz took all the right steps to eradicate it. She was cancer-free, the family thought. But in 2004, on the same day Rick Dunetz was suddenly elevated to head volleyball coach at West Springfield, his mother learned she had Stage 4 breast cancer.
“She did everything she was supposed to do,” Dunetz said, “and it came back.”
That’s when he and his father also threw themselves into caring for Gloria and into research. What they found was that “less than two percent of all cancer [research] funding goes to late-stage disease. There’s incredible anger in the metastatic community. That’s why we decided to focus our energies there.”
But when he began looking for places to donate the funds he raised through his newly formed foundation, he told various cancer-related organizations, “ ‘I want it directed to late-stage cancer clinical research.’ And every single one shot us down. They just don’t do that. You don’t get to choose where the money goes.”
In 2009, an oncologist directed him to George Mason’s proteomics center, which analyzes both the genomics and the protein architecture of each patient’s tumor. Petricoin said the center invented the “reverse phase protein array,” which surveys all the proteins in a tumor, determines which are defective and helps decide what drugs to use to target the defect.
“Nearly 50 percent of the patients,” Petricoin said, “have an increase in [tumor] progression-free survival, something that demonstrates a clear signal that the trial concept is working.” Gloria Dunetz was the first patient in the pilot study, but after six years with Stage 4 cancer, she died in 2010. Bryant Dunetz is now the chief operating officer of the foundation and helps oversee the clinical study.
Rick Dunetz made the work his full-time job in 2008 and now supervises a staff of seven. In addition to teaching teenage girls about breast cancer, Dunetz also tutors players and coaches in peer-to-peer fundraising, spreading technical skills that can be used for other causes. Besides raising money, the events spread knowledge about the realities of breast cancer.
Volleyball hall-of-famer Sinjin Smith, who is on the Side-Out board of directors, said Dig Pink was “a perfect way for the younger kids to get involved in a meaningful charitable program that makes a difference. And it’s focused on the sport of volleyball. The sport can own this and really make a difference.”