Motivated by “family curse,” Dana-Farber doctor dedicates career to Lynch syndrome research

For Matthew Yurgelun, MD, director of Dana-Farber’s Lynch Syndrome Center, the path to a career in cancer research and medicine was driven by a tragic family history.  

Yurgelun’s grandfather died in his early 40s from advanced colon cancer, after surviving multiple other cancer diagnoses. Ultimately, seven of his grandfather’s 12 siblings would also develop various cancers, with several dying young. “Cancer became known as the family curse,” says Yurgelun.

Determined to uncover why his family was so disproportionately impacted by cancer, Yurgelun’s uncle, C. Richard Boland, MD, began studying gastrointestinal and colon cancer. In the early years of his career as a gastroenterologist, cancer was not widely considered a genetic disease. According to experts in the field at the time, his family’s situation was just “bad luck.”

Eventually, the family was recognized as having Lynch syndrome, an inherited condition that increases the risk of a variety of cancers, including colon, uterine, ovarian, pancreatic, urinary tract, and other malignancies. Lynch syndrome is estimated to impact one in 300 people, but most are unaware that they have it until they, or a close relative, are diagnosed with a Lynch syndrome–related cancer.

Before attending medical school, Yurgelun joined Boland in his lab for a summer to help pinpoint the specific genetic alteration present in the family. Boland and Yurgelun developed a cheek swab test, which Boland took to a family reunion to collect samples from aunts, uncles, and cousins who were willing to be tested. Boland documented the journey in his book, Cancer Family: The Search for the Cause of Hereditary Colorectal Cancer.

“That was a cool way to learn more about the family story, and, of course, learn how bench science could translate directly to clinical care,” says Yurgelun. “As I went through medical school, internship, and residency, I kept finding myself drawn towards Lynch syndrome and the impact it has had on my family.”

Now, as director of Dana-Farber’s Lynch Syndrome Center, Yurgelun is at the forefront of many exciting developments in the field. The largest and most comprehensive multidisciplinary cancer genetics group dedicated to the prevention, treatment, and study of Lynch syndrome, the center serves as a one-stop-shop for people at risk for Lynch syndrome, offering genetic counseling and testing, personalized screening plans, and coordinated care with experts in surgery, gastroenterology, and oncology.

“There’s so much about cancer that’s terrifying,” Yurgelun says. “It’s been powerful to provide some clarity through testing and be able to tell people they don’t have Lynch syndrome, or if they do, put a name to it and give them the support they need to manage it.” 

Yurgelun and his colleagues are leading promising research initiatives aimed at better understanding, treating, and preventing Lynch syndrome–related cancers. Through a comprehensive patient registry and biobank, they are systematically collecting data and specimens to study why Lynch syndrome leads to different cancers in different patients, develop personalized screenings and treatments for people who have an increased risk for certain cancers, and find ways to intercept and prevent Lynch syndrome–related cancer altogether.

“We do a decent job of preventing and managing Lynch syndrome–related cancers once we know they’re there, but we’re not satisfied with that,” he says. “We’ve got more work to do to prevent cancers in a sophisticated, smarter fashion, and make it so people can live with Lynch syndrome without getting sick from it.”

Outside of the Institute, Yurgelun is a passionate participant in the Boston Marathon® Jimmy Fund Walk presented by Hyundai as a member of Team Lynch Syndrome. Funds raised through the Walk help fund LYNKED IN, an annual educational conference for patients with Lynch syndrome and their families.

“The energy and positivity of the Jimmy Fund Walk is incredible,” Yurgelun says. “It gives us the opportunity to connect with patients and families outside of the clinic. The enthusiasm from the community fuels us to really move the field forward. We are so appreciative of the grateful patients, families, and donors who share and support our vision for the future of Lynch syndrome.”

At work and on the Jimmy Fund Walk course, Yurgelun’s family story serves as an unending source of motivation. Cancer is still present in his family, but since he and his uncle discovered the Lynch syndrome alteration, no relatives have died of cancer.

“I keep a family portrait of my grandfather and his siblings to remind myself how much this disease has impacted my family,” he says. “It really hammers home the power of prevention, but the story isn’t over by a long shot. A large part of what we’re trying to accomplish as we’re studying Lynch syndrome is true prevention of cancer before it even starts.”

Join Yurgelun and register for the 2022 Jimmy Fund Walk, which will take place on Sunday, October 2. Your participation helps support The Dana-Farber Campaign, our ambitious, multi-year fundraising effort to prevent, treat, and defy cancer. The Dana-Farber Campaign will accelerate the Institute’s strategic priorities by supporting revolutionary science, extraordinary care, and exceptional expertise. As a community, we have the power to create a more hopeful, cancer-free future—in Boston and around the world. Together, we can defy cancer at every turn. Learn more about The Dana-Farber Campaign at