“Traditionally, researchers are trained to use a revolving door model where they go into vulnerable communities like conquistadors, they get the gold, and because we’re scientists the gold is data, put it in a sack over their shoulder and then go back to the ivory tower,” said Rivera-Mindt. “The communities never benefit from that work. There’s no positive feedback loop.”

The grant from Genentech, a subsidiary of the biotech giant Roche Group, is for a two-year study. She will be working with scientists who specialize in Alzheimer’s disease and health disparities research. The goal is to work with the community to develop a culturally-tailored digital platform and social media campaign to increase research participation and engagement of Black adults.

Though her research has shifted to cognitive aging, for years Rivera-Mindt’s academic career was dedicated to investigating the effects of HIV, substance use, and substance use treatment on the brain—particularly among Latinx and Afro-Caribbean populations. She published papers on how certain diverse ethnic groups are often researched as one whole, such as the Latinx population. This is problematic, she said, because being Mexican, for example, is a very different experience than being Puerto Rican, and even regions within Mexico are extremely diverse.

In 2010, The Clinical Neuropsychologist published her paper, “Increasing Culturally Competent Neuropsychological Services for Ethnic Minority Populations.” The paper represented a “call to action” for a discipline that she said was ill-equipped to handle the increasing diversity of the nation. The paper has been frequently cited for its recommendations to neuropsychologists on how to tailor their work in research, clinical services, and infrastructure for the communities they serve.

This January, the same journal published an article Rivera-Mindt wrote titled “White Privilege in Neuropsychology and Norms for Spanish Speakers of the US-Mexico Border Region” that reexamined the problem with a particular focus on the border region, though many of the themes were universal and drew from her earlier work, she said. The pandemic exposed stubborn issues of underrepresentation that she argued may be exacerbated by “white privilege and a lack of appropriate normative data.”

“There have been some gains from 2010 to 2021, and it’s still the case that a neuroscience and neuropsychology workforce is not well equipped to handle the country’s diversity and we continue to grapple with how best to prepare the workforce,” she said.

Over time, her research goals have changed with community needs. Such is the case with Alzheimer’s and dementia research, where the community has prompted Rivera-Mindt’s current focus. She noted that while the Black population is significantly overrepresented in terms of risk, they’re woefully underrepresented in the research—particularly Black men.

Rivera-Mindt said the community-based approach requires researchers to become involved in the communities they are studying. Over the years, this has meant that she has not only studied the Harlem and East Harlem communities, but she’s participated in neighborhood events.

“I took my kids to community meetings, I went to monthly meetings of the Harlem Community and Academic Partnership and the Manhattan HIV Care Network,” she said. “I needed to earn trust. So, I kept my mouth shut and kept my ears and eyes open.”

Once she gained the trust of the community, she was able to offer her services and knowledge. She was soon giving lectures on the importance of brain health, and it was there that her work with the aging population began.

She noted that Latinx and Black individuals are up to three times more likely to develop Alzheimer’s or related dementia than white people. At the same time the same populations are aging at a faster rate, the ripple effects of which are staggering, she said.

“Or workforce capacity will be affected by the health care and caregiving that’s needed for these older adults, and that’s just one of many issues,” she said.

Today, she lives in Harlem and her children grew up going to public school there. She wears multiple hats at the community meetings now, as a community member, a parent, and as a researcher.

“It brought the work to such a deeper level. It has so much more meaning,” she said.

Rivera-Mindt said the pandemic has exposed the challenges of conducting community-based research. People who are most affected by Alzheimer’s and dementia, namely older adults, are frequently less tech-savvy and can no longer attend the community health meetings which have moved online. Rivera-Mindt has had to rethink ways to connect with her community partners. The Genentech grant money has allowed her to convene a Community-Science Partnership Board (CSPB) composed of community members and stakeholders at the start of the study, thereby involving the community from the beginning.  The members of the board will use a large-scale digital resource called the Brain Health Registry to help examine and track the effects of Alzheimer’s and dementia in the Black community.

“We’re starting out at the ground level, but we’re acutely aware of the digital divide and thinking deeply about how to address it by not necessarily focusing all of the digital engagement towards older adults, but instead reaching out to their children and their grandchildren and taking a multigenerational approach,” she said. “We could really make it a family affair and educate everybody about the importance of getting involved.”

“The field of neuroscience has been very male-centric. Most studies were historically done on males, and there wasn’t enough information on the female brain in general. This grant is not only a testament to the excellence of the project proposal, but also to the importance of this topic,” said Kundakovic, who learned she received the grant on Jan. 29. 

Kundakovic studies cellular changes in the brain on a molecular level using a mouse model. Her lab specializes in researching the molecular mechanisms behind hormonal changes during the ovarian cycle and how they can change female brain and behavior. Her research results could lead to the development of sex-specific treatments for mental disorders like anxiety and depression—disorders that are more prevalent in women than in men. 

In recent years, Kundakovic and her team discovered that chromatin, a microscopic cell component, changes its shape during the ovarian cycle, which also changes the way genes are expressed. Over the next five years of grant funding from the NIMH, they will build on their research and try to better understand how chromatin changes in brain cells can impact anxiety-related behavior, especially for female mice, in her project “Epigenetic regulation of brain and behavior by the estrous cycle.” 

“We are trying to understand how chromatin changes within brain cells affect cellular function and contribute to changes in behavior and which specific cells are really critical for changing behavior,” said Kundakovic. “With this new grant, we will be able to identify the specific brain cells that are really responsive to hormonal changes and reveal epigenetic regulators that are possible targets for drug treatment.”

Kundakovic said her research has taken on new meaning during the pandemic, an unprecedented period where more people than usual are struggling with their mental health, especially anxiety and depression. 

“The pandemic may widen the gender gap that we are already seeing in anxiety and depression,” Kundakovic said. “We will have even more women who are affected by these disorders.”

“Instead of, ‘Oh, I see from your chart that you have congestive heart failure, so tell me how your breathing is,’ I started by rolling my chair away from the computer, putting my hands in my lap, not writing, not typing, and said: ‘I will be your doctor, so I need to know a lot about you. Tell me what you think I should know about your situation,’” Charon recalls.

“One woman replied, ‘You mean you want me to talk?’ That tells you something about her prior experience with doctors.”

Charon, a 1970 Fordham graduate, is the founder of narrative medicine, which calls for listening to patients’ personal stories and responding in ways that enhance their care. A Harvard-trained physician and a literary scholar, she is a professor of medicine and the founding chair of medical humanities and ethics at Columbia University.

When patients are invited to share their stories, they often provide a lot of information and context. “One woman said, ‘Well, I didn’t tell you about the fire in our house in Panama,’ which turned out to be really pivotal for this patient. Or, ‘I didn’t tell you that my daughter is in prison,’ or ‘I didn’t tell you that I was in prison, but here, I brought you a book of poems that I wrote while I was in prison,’” Charon says.

Nonverbal cues are also important, she adds. “As I’m gathering everything I might come to know about this person, I’m listening to her words. I’m looking at her face. I’m noticing her gestures. I’m noticing the smell of her body. I’m reacting to any kind of emotional cues that may or may not be said, all that stuff.”

Charon quickly realized that having the doctor and patient work together to better understand the patient’s condition added value to the typical topline diagnosis. “Some physicians, especially those in the surgical specialties, will say to me, ‘Rita, I leave that for the social workers. I need to find out if the patient can bear weight on the new hip.’ Well, do that, but let’s also address the problem that the patient came to us for help with. And sometimes it’s a social problem. Sometimes they can’t afford the medicine, so they don’t take it. Sometimes it’s, ‘I didn’t want to tell you how much alcohol I drink.’

“With this approach,” she says, “we have a better shot from the start in addressing the problems that the patient herself considers problems, and not restricting that to things that have diagnostic codes.”

‘A Person Who Questions How Things Are Done’

While medicine ran in her family—Charon’s father was a family doctor, and one of her grandfathers was a physician as well—she didn’t plan to follow the same path. She describes her college-age self as a young Catholic kid from Providence, Rhode Island. “My parents let me come to New York only if I’d study with the Jesuits,” she recalls. She began her undergraduate studies at Thomas More College, Fordham’s liberal arts college for women at the time, but switched to the University’s experimental Bensalem College and was part of its inaugural class in 1967. (The college closed in 1974.)

At Bensalem, she says, “we took very seriously questions like, how do you learn, and what is learning? It helped me to become a person who questions how things are done, especially in terms of how we learn and how we grow.”

Charon went on to medical school at Harvard, but returned to New York City for her residency at Montefiore Hospital and became interested in the ideas of the bioethicists, historians, and other scholars working in what came to be known as the medical humanities.

During her residency, the work of Henry James captivated Charon so much that what began as a side interest turned into a doctorate at Columbia University. “I became a literary scholar and an internist at the same time,” Charon says. “My study of literature made me a different kind of doctor, and I realized also that what I knew about medicine contributed to the study of literature.”

‘Letting People’s Voices Be Heard’

In the 20 years since Charon coined the term, narrative medicine has been adopted more and more widely; Columbia, Temple University, Ohio State, and other institutions have begun narrative medicine programs. Charon’s research has won funding from both the National Institutes of Health and the National Endowment for the Humanities, and she is the author of the book Narrative Medicine: Honoring the Stories of Illness (Oxford University Press, 2006). Her workshops attract people from across disciplines.

“I’ve found that when I’m able to enact these narrative techniques with patients and families, I feel a stronger bond with them,” says Dr. Daniel Eison, an oncology hospitalist at Children’s Hospital of Philadelphia who studied narrative medicine with Charon. “Narrative medicine is even more important for patients from a racial, religious, or socioeconomic minority. They’re very disempowered in these settings, and narrative medicine seeks to acknowledge the power differentials and level the field a little bit by letting people’s voices be heard.”

As part of the fight against the novel coronavirus, Charon has been making more narrative medicine resources available to caregivers and working to help clinicians and medical students reduce their social isolation using online tools.

“We’ve had a robust international response to these training sessions,” Charon says. “The creative work they are able to do and the responses they receive from their writing is soul-building, and led one emergency department physician to tell us, ‘I was able to breathe for the first time all week at your session.’”

—Chris Quirk is a freelance writer based in Brooklyn.

The two-year grant will allow Calder Center researchers to identify fungi that share habitats with the tick and investigate how weather conditions, such as humidity and temperature, affect those fungal populations. The researchers hope to determine which fungi are most virulent to ticks and the optimum conditions under which they act as a natural deterrent to the spread of the tick population.

“These fungi are one of the reasons why a tick’s life isn’t easy,” said Tom Daniels, Ph.D., associate research scientist at the Calder Center’s Vector Ecology Laboratory and principal investigator on the project. “By understanding the ecology of these organisms, we anticipate development of natural ways to impose further controls on tick populations and the spread of disease.”

Lyme disease is transmitted by the bite of an infected deer tick, and New York accounts for 30 percent of the nation’s cases of the bacterial disease, according to the Federal Centers for Disease Control. In addition, the ticks spread human granulocytic anaplasmosis and babesiosis, two rare diseases that can be deadly if not treated with antibiotics.
The grant represents the first major funding on the fungal study project, which scientists at the Calder Center have been working on since 2001. It is part of the NIH’s R21 program, which funds early-stage studies in areas classified as high risk but which “may lead to a breakthrough.”

Amy Tuininga, Ph.D., assistant professor of biology, and Rich Falco, Ph.D., associate research scientist of biology and regional medical entomologist for the New York State Health Department, will serve as co-principal investigators. In addition, undergraduate and graduate research assistants will take part in gathering soil samples and ticks for the presence of fungi.

“Our hypothesis is that there is not a single species of fungus, but rather several species of fungi that work together to regulate the tick populations,” said Tuininga. “Through our work, we hope to discover a new biocontrol strategy consisting of, say, three or more fungi that can be used together more effectively than just one.”