Saved by Duke Research
From breast cancer to rare pediatric diseases, federally funded Duke research has helped Duke staff and faculty and their families
Editor's Note: The Illness We Never Saw Coming
A microscopic spore led to her wife’s unexpected illness. Working@Duke Editor Leanora Minai helps raise awareness of Valley Fever and Duke’s research to better understand and treat it.
The research project, led by Duke virologist Dani Bolognesi, was established at the urging of the NIH’s Robert Gallo, who was one of the first to discover HIV caused AIDS.
Gallo knew Duke was among the rare places that had the experts, the facilities and the innovation to make a difference, so he made a request to his friend Bolognesi: “You’d better get off your (behind) and start working on vaccines and therapies.”
After one Tuesday in February 1985, Weinhold saw a compound decrease virus replication to nearly zero but didn’t realize he’d witnessed something groundbreaking.
“The first thing I thought was, ‘Oh, I must have forgotten to add something,’” he told Working@Duke.
Except when Weinhold repeated the experiment, he got the same result: It worked.
The effectiveness of the antiretroviral drug AZT was confirmed in parallel by the team at NIH, and by July 1985, HIV patients at Duke were some of the first to receive AZT in human trials. Duke researchers later developed another drug, Fuzeon, to treat HIV.
At the same time, Duke immunologist Barton Haynes, who was also a colleague of Gallo’s, began work on an HIV vaccine. What he initially thought would take a couple years proved to be far more difficult against a virus that continually mutated and evaded vaccine attempts.
That work led to the establishment of the Duke Human Vaccine Institute, which continues despite the NIH terminating funding in 2026 for its centerpiece Center for HIV/AIDS Vaccine Development (CHAVD). Haynes says after 20 years of work on the vaccine, he’s “just a few years” away from a prototype HIV vaccine – provided the funding to continue innovation can be secured.
“We’re committed to finishing the job,” Haynes said.
Through it all, support from the NIH, which funded 90% of the early HIV research, according to Bolognesi, was “indispensable,” he said.
Duke Research – By the Numbers
$863 Million – Total of all federally sponsored research at Duke, FY 2024
11,810 – Total number of publications by Duke researchers, FY 2024
2 – Number of Nobel Laureates for Chemistry: Robert J. Lefkowitz in 2012 and Paul Modrich in 2015
2 Million – Number of patients enrolled in more than 2,500 active Duke University School of Medicine research studies with roughly 3,500 sites worldwide in 2024
302 – Number of medical and non-medical invention disclosures by Duke researchers, FY 2024
94 – Number of patents issued for Duke medical and non-medical inventions in FY 2024
Source: Duke University School of Medicine and Duke Office of Research & Innovation
“I don’t know that it would have worked any other way, quite frankly,” said Bolognesi, now retired.
Federal funding has long played a crucial role in supporting research at Duke, a point underscored in a 1989 letter to the editor in The New York Times, co-signed by Bolognesi, Weinhold and others, which highlighted Duke’s role in the development of AZT, the first drug to offer a substantial improvement in quality of life for AIDS patients.
They wrote, “It does not serve anyone’s interest to nullify the importance of Government-sponsored research in solving problems of American public health.”
For decades, Duke research has furthered medical innovation and discovery, found treatments for rare and chronic diseases and saved lives.
“It’s part of our brand, it’s part of our identity,” said Jennifer Lodge, Duke Vice President for Research & Innovation. “It’s why faculty come here. It’s why students come here. It’s a big part of what we do and what so much of our staff does.”
But this year, new federal policies and directives have severely cut research funding at Duke and other universities.
For the Duke employees in the following stories, federally funded research has made a real difference in their lives.
A Genetic Breakthrough That’s Saving Lives at Duke
Kimberly Ross always suspected there was a genetic link to her family history of cancer. Years ago, her aunt was diagnosed with breast cancer. Her grandfather had prostate cancer. So did her uncle and her father.
That’s why as soon as her father said he was going to be tested to determine if he had a genetic predisposition to cancer, Ross made a plan. If he had the BRCA1 or BRCA2 mutation that correlates to an increased hereditary risk for cancer, she would get the genetic test, too.
And if her results were positive, she wouldn’t hesitate: she’d have a double-mastectomy and hysterectomy to reduce her risk. As a Clinical Nurse in the Duke Cancer Center who cares for gynecologic cancer patients, Ross has witnessed firsthand the benefits of proactive treatment. “I really wanted to make sure that I did whatever I could do to reduce my risk to be here longer for my children and my family,” said Ross, who shares 11-year-old Ava and 7-year-old Camden with her husband, Chasen
In 2021, at age 34, Ross learned she had two cancer- linked genetic mutations, BRCA2 and PMS2. But before her preventative double-mastectomy in February 2022, routine screening found something else: a small tumor. Suddenly, Ross’s preventative surgery became a treatment for triple-negative breast cancer.
“If there’s such a thing as luck in cancer, she was somewhat lucky in catching it,” said Dr. Jennifer Plichta, a Duke Surgical Oncologist. Plictha said Ross is her third patient to discover cancer while preparing for risk-reducing surgery.
Because Ross was not yet 40, the recommended age to begin annual mammograms, she likely wouldn’t have caught the tumor so early without the prophylactic treatment sparked by genetic testing.
And the genetic test exists partly because of Duke physicians who contributed to federally funded research that helped identify the location of BRCA mutations.
Duke Drs. Andrew Berchuck and Jeffrey Marks, along with then-Duke physician James Iglehart, were part of a large research group that was involved in the discovery of the BRCA1 gene on chromosome 17 that is associated with a predisposition to breast and ovarian cancer. The findings were published in “Science” in 1994.
Since then, BRCA2 and other hereditary cancer markers have been identified – and helped to change the way cancer is treated. Nearly 70% of patients with a BRCA1/2 mutation develop breast cancer, compared to 12.5% in the general population, according to the National Cancer Institute. Prophylactic surgery can reduce that risk to 5%.
The Duke Cancer Institute has a well-developed cancer genetics program that includes five genetic counselors.
“We’re really at the tip of the iceberg in terms of understanding the impact of familial risk in cancer development,” said Liz Ferguson, a Certified Genetic Counselor with Duke Clinical Cancer Genetics.
For Berchuck, now Duke’s Chief of Gynecologic Oncology, the discovery was meaningful. His mother died from breast cancer in the 1970s at age 52, about two decades before he helped identify the genetic marker she may have carried.
“I have a very personal connection to it,” Berchuck said. “I am thrilled to serve as a director of the DCI clinical cancer genetics program along with Dr. Plichta. We are identifying over 40 patients a month with cancer susceptibility mutations, and this has been incredibly impactful for these patients and their families.”
The groundbreaking discovery changed Ross’s life. She endured chemotherapy, had a preventative hysterectomy in 2023, and is now cancer-free – thanks to genetic testing sparked, in part, by work from Duke research.
“It was truly lifesaving,” Ross said.
Building a Future of Better Hearing
The crash of ocean waves. A Tim McGraw song on the radio. The chatter of cicadas in summer.
For Shelly Currie, all sounds are gifts.
Born deaf in her right ear and with weak hearing in her left, Currie knows what it’s like living in isolating silence. In 2018, a year before Currie joined Duke’s workforce, Duke doctors surgically placed a cochlear implant in her left ear, helping restore her hearing — a breakthrough developed at Duke.
“I don’t take this for granted,” said Currie, Grants & Contracts Administrator for the Duke Department of Medicine whose brown hair hides the implant’s quarter- sized processor behind her left ear. “Not a day goes by that I’m not happy to put this little thing on. I’m so grateful for everything that went into this.”
In 1984, Duke faculty member Blake Wilson co- founded Duke’s Cochlear Implant Program, one of the first of its kind, to study a promising-but-ineffective device that had been around for decades. Back then, he recalls, there were around 1,000 users of the implant, which provided awareness of environmental sounds, but not intelligible speech.
Using a head-mounted microphone and processor, and a surgically implanted receiver that electronically stimulates the cochlea—the boney tube containing the ear’s sound-detecting organ—cochlear implants relay information that the brain translates as sound.
Funded by the National Institutes of Health (NIH) from 1983 to 2005, Wilson’s interdisciplinary Duke team, in collaboration with the Research Triangle Institute, developed the signaling method modern cochlear implants use to deliver sound information that the brain can easily interpret.
The innovation allowed users to understand speech, making the device a biomedical engineering marvel now used by more than a million people worldwide.
At Duke, home to some of the earliest cochlear implant surgeries, 155 were installed during the 2024-25 fiscal year.
“It’s the golden child of cooperation between engineering and medicine,” said Wilson, now Director of the Duke Hearing Center. “We had that wonderful cooperation here at Duke.”
Growing up with severe hearing loss, Currie tried traditional hearing aids, but they only amplified sound, offering no help understanding speech. She managed by reading lips and positioning herself in classrooms and conversations to catch sound with her functional left ear.
In her 20s, as her left ear worsened, Currie felt powerless, struggling to follow meetings and avoiding family holiday gatherings and cookouts because she couldn’t hear conversations.
“I felt my independence being taken away,” she said. “It was defeating.”
In 2018, Currie underwent the cochlear implant surgery at Duke.
After the appointment to activate the device, Currie walked through Duke Clinic’s busy corridors. Chatting with her mom, she heard footsteps, voices and ambulance sirens outside. Tears flowed as Currie, who describes her implant as life-changing, savored the beautifully noisy world she’d missed.
From Mystery to Diagnosis, Duke Unlocks Rare Condition
When their son Quinn was born in 2014, first- time parents Jamie Mills and Liz Aronin experienced a whirlwind of joy and anxiety.
They adored their brown-eyed son but found reasons to worry. Quinn’s feedings were difficult. He didn’t babble like other infants. When they talked to him, his eyes drifted as if scanning distant horizons.
Soon, Quinn began having seizures and needed surgery for cataracts in both eyes. Weighing 12 pounds at age 1, he required a feeding tube. Regular periods of intense, unexplained pain left him inconsolable, once crying for 14 hours straight.
“We didn’t know why this was happening,” said Jamie, Administrative Director for the Duke Global Health Institute. “There wasn’t anything we could tie this to.”
Quinn saw several Duke doctors, but in December 2015, an inconclusive round of genetic testing left Jamie and Liz with no answers about Quinn’s condition and whether future siblings might face it, too.
That’s when they found the Undiagnosed Diseases Network, a research study backed by the National Institutes of Health (NIH).
Launched in 2013, the Undiagnosed Diseases Network unites doctors and researchers from 24 clinical sites—including North Carolina’s only site at Duke University—to solve challenging medical mysteries with advanced technology and collaboration.
Patients undergo a series of exams and DNA sequencing. Experts analyze the results using computational models and compare them against global genetic databases.
After Duke specialists studied Quinn’s symptoms and genetic makeup—and compared results with cases worldwide—Jamie and Liz got a call from Kelly Schoch, their Genetic Counselor at Duke. A diagnosis had been found. A mutation in the NACC1 gene was affecting Quinn’s neurological development. Only six other children were known to have the condition.
With no sign it was inherited, Jamie and Liz’s future children wouldn’t be at risk.
Nine years later, nearly 70 families of children with Quinn’s condition share support and advice in a Facebook group. Duke’s clinical site team has published research on the condition and neurologists elsewhere are studying it.
While still facing challenges, 11-year-old Quinn finds joy zipping down Durham’s American Tobacco Trail with Liz in his deluxe running stroller and in tickles from 8-year-old Josie, the oldest of his three little siblings. “I can’t even imagine what our life would be like without Quinn’s diagnosis,” Jamie said. “It allowed us to build this family, this little team of people that love him."
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