In April, Riley McDevitt received test results from her genetic counselor at Dana-Farber. Tests showed a diagnosis of Lynch syndrome and McDevitt knew exactly what she wanted to do after hearing the news: celebrate with her family over tacos.
The diagnosis wasn’t entirely unexpected. “I have a family history of Lynch syndrome, so I’ve known about the condition and its associated cancer risks since I was 9 years old,” says McDevitt, now 23.
Lynch syndrome is an inherited genetic condition that increases the risk of certain cancers, particularly colorectal and endometrial. It affects about one in every 300 people and can be caused by mutations in one of five genes. Current screening recommendations for people with Lynch syndrome include colonoscopies, upper endoscopies, skin checks, and gynecologic exams every 1-2 years, along with other screenings based on family and personal history.
McDevitt says her diagnosis marked a “full-circle moment” after spending her teenage and early adult years doing advocacy work around Lynch syndrome and, in April 2025, joining the Lynch Syndrome Center at Dana-Farber as a clinical research coordinator for the Tri-Ad5 study. Led by Ramona Lim, MD, the cancer vaccine trial is designed to investigate how a targeted vaccine can lower the risk of colon cancer in patients with Lynch syndrome. McDevitt also works on the Dana-Farber Lynch Syndrome Registry, a biobanking research study that collects clinical information and blood, urine, and stool samples from patients who are known to have the condition. The data can be used to help researchers develop strategies to improve prevention, early detection, and treatment of cancer.
Back to the Beginning
While her clinical research coordinator role is new, McDevitt’s familiarity with Dana-Farber’s campus is not. At 15 years old, McDevitt accompanied one of her parents to the LYNKED IN Conference – an annual, one-day educational event hosted by the Lynch Syndrome Center designed to connect, empower, and educate patients and families about Lynch syndrome. There, McDevitt also met Anuradha Chittenden, MS, LGC – the genetic counselor who would inform her about the genetic test results just eight years later.
“Riley framed the testing as ‘knowledge is power,’” explains Chittenden, manager of genetic counseling in Cancer Genetics and Prevention at Dana-Farber. “She’s invested in being a patient advocate and serving others. She’s done that for a long time, so I believe it’s ingrained in her.”
McDevitt has also been active in Camp Kesem – a nonprofit organization that offers free summer camps and other year-round programming for children whose parents have cancer. As a child, McDevitt attended Camp Kesem at Yale University when a parent was going through treatment for colon cancer. As a young adult, she has been a keynote speaker at camp fundraisers and consecutively served on the advisory board.
“A lot of the advocacy work I’ve done has been in service to others,” expresses McDevitt. “When some of my family members were tested and consequently diagnosed, I started to become more introspective and thought I should get tested as well.”
Brave and Emboldened
Referring herself to the Lynch Syndrome Center then became an act of self-advocacy. “While I waited for the results, I told myself, my family, and my friends that no matter the outcome, I would celebrate,” she says. “If the results showed that I didn’t have Lynch syndrome, that’s good to know. If the results came back positive, I knew I could make decisions about preventive screenings.”
This has been McDevitt’s perspective since she first learned about Lynch syndrome as a child. “It can be hard for someone to hear that they have this condition, but knowledge truly is power,” she explains. “You can’t change the test results, but you can make decisions based on them.”
At the Lynch Syndrome Center, patients meet with a genetic counselor and a physician who specializes in Lynch syndrome to review their test results and individual risks associated with each genetic mutation. The care team collaborates with patients and families to create personalized care plans that map out which preventive screenings are needed and when. They also share the treatment plan with primary care providers and other specialists and offer resources based on individual medical, emotional, and personal needs.
“There are a lot of preventive screenings for Lynch syndrome, but as staff, we act as the quarterback of the care plan,” explains Chittenden. “Patients are in the driver’s seat in terms of us meeting their wants and needs. We adjust as those needs change.”
A Positive Perspective
It’s important for patients to know that Lynch syndrome is a condition that can be managed, says Matthew Yurgelun, MD, director of the Lynch Syndrome Center and director of clinical research in Cancer Genetics and Prevention.
“With Lynch syndrome, a person has an elevated risk of developing certain cancers, but it’s not a guarantee that they’ll get cancer or die from it,” he adds. “My hope is that, like Riley, having Lynch syndrome brings a sense of empowerment.”
Prepared with knowledge about her condition and buoyed by a positive attitude, McDevitt continues to be an advocate for herself and others. “Lynch syndrome doesn’t have to be a sad cloud that hangs over your head,” she says. “It can be a cloud in the sky on a sunny day.”