Ever heard of “citizen science”? That's how pediatric oncologist Jim Olson, MD, PhD, describes a new kind of fundraising that's helped support his cancer drug development research over the past couple of years.
Olson, the Sarah Hughes Chair for Pediatric Oncology at Fred Hutchinson Cancer Research Center and Professor of Pediatrics at the University of Washington, has turned to social media and crowdfunding—a newish popular method of raising money—to connect with people who want to donate to cancer research. In an era of thinner and thinner NIH grant options, Olson says he had to find more creative options to look outside the traditional fundraising paradigm box, in order to financially back his research work, since otherwise his patients would lose out.
“We announced Project Violet in 2013 and it captured a lot of attention through people's hearts,” Olson said, explaining that the inspiration was an 11-year-old patient named Violet who had a zest for life despite her struggle with a rare and deadly brainstem glioma.
In fact, it helped fund research for “tumor paint,” which he explained is derived from scorpion DNA and chemically adheres to cancer cells, causing them to light up. It is much more sensitive than MRI imaging techniques, and can help surgeons spot cancerous tissue while leaving healthy tissue untouched.
“This is a drug we developed for pediatric brain cancer, but now we've learned that it has clinical applications for breast, colon, lung, prostate, and skin cancer,” Olson notes on the Project Violet website (projectviolet.org).
Project Violet aims to develop new anti-cancer compounds found in nature that will attack cancer cells, but leave healthy cells intact. The project's goal is to raise money to pay for the research through crowdfunding.
“With the help of my patients, we raised over eight million dollars for tumor paint research and other technologies. We are now up to 13 million dollars,” he said.
A recent ASCO survey (JCO 2014;32:129-160) found that 75 percent of members who responded to a survey said that the current federal funding situation was having a direct impact on their ability to conduct cancer research, and 38 percent said their time spent on research has been reduced. In addition, 35 percent reported having to lay off research staff, 28 percent said they were participating in fewer federally funded clinical trials, and 26 percent had to delay the launch of a clinical trial.
Olson's grassroots-style fundraising efforts extend into other areas, too. Taking advantage of his town's reputation for churning out great bands, he has hosted more than 40 concerts in his home to raise additional funds.
“We hosted up-and-coming Seattle musicians in our home, for our friends, and recorded the performances live to be made into a CD. One hundred percent of the proceeds fund research. The musicians, some of whom are having a hard time paying their rent, donated their time,” said Olson about the making of “The Violet Sessions” CD (http://www.violetsessions.org).
He and colleagues also use social media platforms such as Twitter and Facebook to promote Project Violet and a crowdfunding page on Kickstarter.com.
Mostly, Olson credits his patients and their families and friends with much of the fundraising work: “I think the most successful thing we've done so far is a ‘friendraising’ campaign in February,” he said. “One of the family members of a child who passed away wanted to support our lab and so did it in the form of a challenge grant. We wanted to raise money but also challenge people to build a community. If we could get over 5,000 Facebook likes, the family member would give a sizeable donation to the lab. We went from 1,100 to over 7,000 in less than a month.
At the start, it wasn't clear who would come to the page and want to give, he said. “We didn't know who our demographic would be. On Facebook, it's entirely different from the demographic we would have normally gone after if we were doing a purely philanthropic campaign. Over 80 percent of those active on our Facebook site are women, 35 to 45 years old. These are young moms who really understand the importance of making advances in pediatric cancer, knowing it's not their kid affected but it could have been.”
There were some surprises too, Olson said. “A pediatric practice heard about our work through Facebook and chose to wear Project Violet t-shirts and every time a kid had a flu shot they donated $1 to Project Violet. A guy came in to the Hutch and brought me a $100,000 check. His kid was a three-year-old who went to that pediatrician's office for a flu shot. You just absolutely cannot predict what will resonate.
“You just need to connect with people, put it out there, and see what people like, and pay attention to that—not force your Facebook or Twitter audience to do what you want them to do.”
Translational Rather than Basic Research
When it comes to successful crowdfunding, it helps to have research that is translational, said Ralph Raphael Valdivia, PhD, Vice Dean for Basic Science at Duke University. He said cases that pull at the heartstrings—that are underfunded, involve a tragedy, or are tailored to an individual case—may be more likely to draw more crowdfunding dollars.
To raise money for basic science may be tougher, he said. “If I am working on getting funding for research that involves viruses that infect bacteria that live in sewers, people may not be interested.”
Valdivia is not aware of any crowdfunded research at Duke, but he said that a few researchers have been invited to try it: “I am not sure they tried. A concern, I learned, was whether there would be any restrictions on publications,” he said.
He said raising millions may not be the norm for medical researchers in any case. “From what our development office informs me, the match from science crowdfunding approaches such as Experiment.com is mostly in the $5,000 to $10,000 range, which is enough for seed funding, but not enough to support a research program.”
Olson offered one additional piece of advice: It couldn't hurt to mine the high-tech industry for partners willing to help out.
“We had a budget of zero for Project Violet. We needed a website and social media. So I sent a note through internal communications to [the nearby offices of] Amazon and told them that if they wanted to meet the scientists I'd buy a keg of beer and they could come over to the Hutch and we'll get to know each other. Seven of them eventually became volunteers, and that's now up to about 25. They built our entire interface for the Project Violet website and user experience. And one Amazon volunteer really set the tone for our social media. We learned from her.”
But Olson confessed: “I wouldn't spend two minutes on social media it if it weren't for the fact that we have a job to do here on behalf of kids with brain cancer. Doing a good job on social media is exactly the same as writing a good grant or answering a colleague's email.”