Crowdfunding cures

Donors Cure marketing director Courtney Wagoner (from left), co-founder and Vice President Joseph Helpern and Managing Director Tara Sokolowski talk about the nonprofit’s official launch in Helpern’s office.

Young researcher Vitria Adisetiyo wants to study attention-deficit hyperactivity disorder, or ADHD, and the effects and therapeutic limitations of prescribing psychostimulants drugs, such as Ritalin and Adderall.

To do so, she wants to employ an advanced MRI imaging method for brain scans of 20 healthy adolescent and young adult males, ages 14-25, who illicitly use the drugs for recreational or performance enhancement purposes.

Her interest lies in the fact that the rate of ADHD diagnosis has risen 42 percent in the past decade, giving more youth access to the drugs.

“This overavailability of psychostimulants has inadvertently resulted in a public health problem: increased rates of misuse, abuse and divergence (selling and sharing) of psychostimulant medications in adolescents and young adults,” says Adisetiyo.

“Despite this growing trend, the effects of illicitly using psychostimulant medications on the healthy developing brain remain unknown.”

But there’s one problem for the postdoctoral research fellow at the Medical University of South Carolina: funding her study.

Adisetiyo knows the deck is stacked against her for landing federal research grant money for her study.

“Funding for scientific research is harder to come by,” she says.

“In fact, National Institute of Health (NIH) and National Science Foundation budget cuts are generally considered the norm, allowing less than 15 percent of applications to get funded each funding cycle. Given these high stakes, researchers are more reluctant to pursue innovative and risky ideas, some of the most important ingredients to problem solving.”

She adds NIH grant mechanisms designed for high-risk, high-reward ideas need preliminary data to be competitive even when it’s not officially required.

Starting last year, a homegrown crowdfunding nonprofit, Donors Cure Foundation, began offering a new alternative that will help bridge the gap between finding critical preliminary data and being competitive for larger NIH grants.

Crowdfunding, in general terms, is a practice of raising funds for a project or venture, usually for the common good, by seeking relatively small donations from a large number of people, usually via the Internet.

Donors Cure, based in Charleston, debuted its website in November but is doing its official launch this week. It is a crowdfunding platform specifically targeting biomedical research designed to lead to new treatments and cures for diseases, disorders and other conditions.

While crowdfunding has become common in recent years, Donors Cure is novel because it connects everyday people to young scientists with research ideas who would likely not otherwise get funded.

The young researchers, who have the assistance of Donors Cure staff “CURE-ators,” stay in touch with the donors throughout the process of their research with videos, blog posts and other means of communication.

Currently, one CURE-ator is overseeing 18 research projects. Some include a novel drug combination to treat pancreatic cancer, identifying protein markers for muscular dystrophy and even how yogic breathing can alter biomarkers in saliva.

“We are constantly evolving the program,” says Courtney Wagoner, marketing director for Donors Cure. “ As the program grows and we continue to take on researchers from other universities, there will be a need to have multiple CURE-ators who oversee a select group.”

The nonprofit was co-founded by Dr. Joseph Helpern, a physicist whose specialty is brain imaging at MUSC, and New York real estate attorney Charles C. Dorego.

Helpern, director of MUSC’s Center for Biomedical Imaging, is credited with building the first 3-Tesla MRI and yet even he “struggles every year” to get funding for his research. And as the federal government continues tightening budgets, medical research funding is getting strangled.

“Over my lifetime, the funding of NIH has been plummeting. We’re back at funding levels of 2002, so we’ve lost a decade of progress,” says Helpern. “It’s even worse than you think because only good scientists are applying to the NIH begin with. ... The National Institutes of Aging are rejecting 90 percent of the research.”

The problem is compounded, Helpern adds, by tightening budgets of universities.

“Young faculty members used to get a position at a university who then invested in the person. Now you have to have a grant to get the position. We (MUSC) don’t hire faculty without a grant,” says Helpern, adding that “a vast majority of my salary comes from outside” MUSC.

Helpern says he was telling this to a friend, a successful businesswoman and philanthropist in New York City, who was astounded to hear of all the hoops, delays and rejections researchers endure just to do their work. She wanted to help. Helpern and Dorego determined that crowdfunding should be the route to pursue.

Helpern says part of the problem with funding lies with scientists themselves, notorious for having a skill set lacking in public relations.

“We’ve done a poor job at communicating to the public the importance of medical research,” says Helpern. “There should be a public outcry right now about what Congress is doing to NIH, but there is no outrage because the public doesn’t know.”

To help Donors Cure improve communications, the first official staffer hired was managing director Tara Eckenrode Sokolowski, who brings expertise from both cell biology and bioinformatics. She spent the first year doing market research and fine-tuning the mission idea of Helpern and Dorego.

Sokolowski, however, sees that communication going beyond the often impersonal world of the Internet. She and Wagoner are hitting the streets and beating the bushes to bring attention to Donors Cure.

Last weekend, they took a photo campaign, started at the Cooper River Bridge Run Expo, to the Charleston RiverDogs game and Second Sunday on King Street. Photos will get posted not only on the Donors Cure website and Instagram account but on more than a dozen digital billboards in Charleston and across the state.

Today, they will be bringing sixth- and seventh-graders from Burke High School to MUSC to meet researchers and do some hands-on activities in the laboratory.

“Our goal is education,” says Sokolowski. “Part of our mission is educating the general public about what goes on in science, and that starts with kids and goes to adults. No audiences are excluded.”

Helpern says Donors Cure will never be a substitute to critical, large grant funds from the government or corporations, but rather is intended as seed money for young research.

“We’re not talking about million-dollar grants. We’re talking about pilot grants, start-up grants, grants that are going to launch stuff. Sometimes you need $10,000 to get started. We want to fund smaller grants, from $1,000 to $25,000,” he says.

The beauty of crowdfunding, Helpern adds, is that it is a “tyranny of numbers.”

“It’s the fact that you can easily convince a thousand people to give you a dollar each as opposed to one person to give you a thousand dollars, but you have to shake the trees to find those thousand people,” says Helpern.

To read about the current research projects getting funding via Donors Cure or to donate, go to https://www.donorscure.org/.