More than one in every 300 people in the United States have Lynch syndrome (LS)—a genetic condition that can lead to gastrointestinal, gynecologic, and other cancers. Yet most of those people are unaware of their condition and discover it only after they are diagnosed with cancer.
Linda and Jay Hooley of Hingham, Mass., want to change that. They made a $1 million gift to Dana-Farber’s Lynch Syndrome Center to fund research, expand access to online screening tools, and broaden awareness of the condition. It is the largest gift received by the center, which is the first of its kind in the world, and will advance the Institute’s leadership in cancer early detection and interception—a key priority for The Dana-Farber Campaign.
The need is critical, because people with an LS mutation have a higher-than-normal risk of developing cancer. Their lifetime risk for colorectal cancer is 22% to 74%, compared to 4% to 5% in the general population. Women with LS have a 15% to 71% risk of developing uterine cancer, compared to 3% for other women.
The Hooleys’ gift will support a range of research efforts, including the Lynch Syndrome Patient Registry and Biobank focused on understanding the processes that occur prior to the development of cancer. The LS registry is an ambitious effort to collect clinical data, diet, and lifestyle information and store biological samples from the full spectrum of LS patients—from those who do not have cancer to those who are survivors.
“It seems like there’s a disproportionate lack of information on something that’s impacted such a high number of people globally,” Jay said. “Lynch syndrome is way down the list in terms of notoriety, visibility, acknowledgment.”
“We hope our gift helps to raise awareness,” said Linda, who was referred to Dana-Farber’s center after a family member with cancer was found to have the condition. She and Jay dream of a day when screening for Lynch syndrome is widespread, so that people whose family histories put them at risk can be tested for mutations in the five genes associated with the condition. If they test positive, they can then be monitored carefully, make diet and lifestyle changes, and receive personalized care to reduce the likelihood that they will develop cancer.
“This gift is incredibly meaningful on a number of levels,” said Sapna Syngal, MD, MPH, who founded the Lynch Syndrome Center in 2019 and is also director of research in the Center for Cancer Genetics and Prevention. “It will help us boost awareness among doctors, patients, and the general community as well as advance our research, and enhance our ability to develop new screening, prevention, and treatment methods.”
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