Scientists are, as Albert Einstein described himself, “passionately curious” about breaking new ground in their respective fields. Characterizing new diagnoses for ophthalmologic disorders, treating Alzheimer’s and neurodegenerative disease with yoga, and new stroke treatments are but a few groundbreaking innovations whose lead researchers are members of the Medical University of South Carolina (MUSC) community. New discoveries at MUSC are being made daily, but complete fruition of an idea is wrought with challenges where there is a lack of financial support.
MUSC’s scientists are emboldened not just by research financing, but opportunities to have indelible impacts in medical research. To have both is a scientist’s dream. Given the nature of biomedical research funding, however, it is increasingly difficult to secure extramural grants from private, governmental and nongovernmental sources. Competition and restrictive schedules pose significant barriers to successfully pursuing funds needed to fully develop ideas. There are alternatives to the conventional methods of obtaining funding for research.
Donors Cure was co-founded by Joseph Helpern, PhD, professor and vice chairman for research in the Department of Radiology, to provide another funding option that gives anyone the opportunity to support biomedical research by donating to specific projects led by researchers at universities and institutions across the U.S.
“Research funding is at a huge deficit right now, particularly for younger investigators who are trying to start their careers and can’t find funding to do test projects to really get going,” said Tara Sokolowski, PhD, managing director at Donors Cure. “The other issue is donating money to large associations with little recognizable tangible outcomes.”
Donors Cure merges the versatility of a 501(c)(3) non-profit with startup novelty and appeal by allowing donors to crowdfund—raise money publicly from anyone visiting the researcher’s customized Donors Cure webpage. What’s more, donors can interact with the researcher through what Courtney Wagoner, Donors Cure marketing director, terms a CURE-ator. Donors can keep up with researchers in real-time as progress is made on projects they support through a designated CURE-ator.
“Some of the research projects are communicated to the general public in a way that they understand and relate to,” said Wagoner. “CURE-ators are charged with translating the researcher’s work into language donors can understand.”
Biomedical research can sometimes veer into the obscure for laypeople. The Donors Cure model is largely based on empowering donors with an understanding of a specific research project through information and knowledge campaigns.
Existing sentiment for diseases and causes compel donors to give, while merely being a part of transformational research draws others in. Donors Cure hosts projects that are not only comprehensible, but applicable to everyone.
Suparna Qanungo, PhD, research assistant professor in the College of Nursing and Kathleen Cartmell, MPH, PhD, assistant professor also in the College of Nursing, are using Donors Cure to fund a pilot project designed to “improve the quality of life for cancer patients and their families facing life-threatening illness” through palliative care using trained navigators in rural India. Using the World Health Organization palliative care toolkit, these navigators facilitate the delivery of in-home care, and coordinate additional services as needed with the Saroj Gupta Cancer Centre and Research Institute for further service provisions based on need. There is a serious need for palliative care services, especially at the patient’s home. According to Qanungo and Cartmell’s project summary, 80 percent of patients living in low and middle income countries need palliative care whereas only 10 percent receive care. Palliative care is offered to patients suffering not just from cancer, but HIV/AIDS, diabetes, and congestive heart failure, too.
“We found that the biggest need for cancer patients in rural India was palliative care given that there are so few providers for a huge number of patients,” said Cartmell. “For this initial study, we’re doing interviews with stakeholders in India to develop our navigator program to best meet patients’ needs in accordance with the World Health Organization palliative care toolkit. Our goal is to expand the reach of services because only two to three percent of patients have access to palliative care in rural India.”
Elizabeth Kubler-Ross famously brought attention to palliative care in the late 60s when she published a book based stories from dying patients entitled, On Death and Dying. Since then, end of life care has been, to some degree, verboten in the medical cognoscenti mostly for ethical reasons. Now the conversation has been renewed given litigation on end of life services, global aging populations, and a jump in non-communicable disease worldwide. Qanungo and Cartmell saw the trends and decided to fill large holes in what is seemingly novel global health research.
“Global health research funding is dominated by curative treatment projects leaving a small percentage for supportive services such as palliative care,” Qanungo said. “Donors Cure funding can support our work to treat illness at its worst by expanding services for patients beyond the 25 kilometer service radius of the cancer center. This will enable the patients to receive pain and symptom support in their homes without having to travel long distances to the clinic.”
Donors Cure gives researchers like Qanungo and Cartmell an outlet to 1) showcase their research beyond the typical scholarly journal setting and 2) raise money through stakeholders who tangibly see the true value of biomedical research.
“There are real tangible stories connected to every researcher,” said Wagoner. “At the end of the day we are trying to find cures, treatment options or other paths in terms of care. I believe we are on the cusps of something amazing.”
Donors Cure is getting its start with MUSC right here in Charleston with a public launch in April. The launch debut will focus on a selfie and text campaign, which will be rolled out at the April 11th Charleston RiverDogs Game and Second Sunday on King on April 12th. The selfie campaign will encourage people to write a disease that they’d like to cure on a white board or piece of paper, and then take a photo to post to social media using #DonorsCure. Donors Cure is also partnering with MUSC to host a Meet the Researchers day, where 7th and 8th grade science classes from Burke Middle School will get to take a field trip to MUSC and meet a few of the researchers who have joined forces with Donors Cure. Cartmell and Qanungo are participating in the event and plan to speak to their Global Health project.