A Fatal Family Secret

When Susan Weiss Liebman’s pregnant niece died suddenly at the age of 36, the geneticist uncovered a family mystery dating back generations.

“I believe I became a geneticist…because I was destined to help understand the family illness and advocate for genetic testing,” she wrote in her book, The Dressmaker’s Mirror: Sudden Death, Genetics, and a Jewish Family’s Secret. (Rowman and Littlefield)

While weaving together her family history and information about genetics, the book opens with a chilling version of Liebman’s family tree. Dotted lines outline nine people who died with unusual illness or early death, including her uncle, Eugene. For years, relatives said he fell victim to a tragic accident at the age of four when a mirror fell on him back in 1916.

When an autopsy revealed her niece died from dilated cardiomyopathy, the same heart condition her mother, Liebman’s sister, had battled for years, she began to connect the dots and discover the truth about Eugene’s death.

Liebman studied genetic research, spoke to family members, and underwent her own heart screenings. She involved experts including a team at the Center for Genetic Medicine at Northwestern University, who ultimately identified a mutation that existed in a previously unknown heart disease gene, FLNC, which impacts heart muscle function. Liebman’s sister and niece both carried the mutation.

With more digging, Liebman found that one in 800 Ashkenazi Jews have this specific mutation. “It’s a founder mutation,” she explained. “Due to pogroms, we ended up with 300 to 500 Ashkenazis at some time in the Middle Ages. One of these survivors had this mutation. People in this group then married each other, and that mutation became much more frequent than you would’ve expected.”

Liebman tracked down Eugene’s death certificate. Cause of death: heart failure. It wasn’t the mirror. She now theorizes that her grandparents told her that story to protect the marriage prospects of their surviving children.

A professor at the University of Nevada who taught at the University of Illinois at Chicago for three decades, Liebman is returning to Chicago in September to speak about all of this at an event sponsored by the Norton & Elaine Sarnoff Center for Jewish Genetics, a supporting foundation of JUF.

While she’s given dozens of talks since the book came out, this is only the second long-distance, in-person event. The rest she did via Zoom as a cautionary measure in the wake of COVID. So why get on a plane now? “I know a million people in Chicago and Skokie. [The Sarnoff Center] is a great organization, and I would like to help,” she explained.

“This is an opportunity for the whole community to come together and learn about one very important topic,” said Eve Kleinerman, Executive Director of the Sarnoff Center. “Her family members were skirting around how members of the family had died. The end effect was that there were multiple family members who were falling victim to their genetic disorder rather than talking about it at the forefront and then educating the generations to come so that there can be proper lifesaving measures.”

Founded in 1999, the Sarnoff Center provides resources and support related to hereditary cancers and genetic disorders more common among individuals of Jewish descent, as well as low-to-no cost genetic counseling and carrier screening programs.

Although genetic testing can be frightening, it’s also powerful. “Just because you have a mutation, it doesn’t mean you’re going to get the disease,” Liebman said. “But let’s screen you more frequently so you can see if you’re beginning to get it and treat you earlier.”

“Knowledge with a set of action items for somebody to take, whether it’s for their own health or for future generations, that can be lifesaving,” Kleinerman added.

Sidebar

The Norton & Elaine Sarnoff Center for Jewish Genetics Presents A Story About Pursuing the Past for a Better Future

Featuring:

Susan Weiss Liebman

Author of The Dressmaker’s Mirror: Sudden Death, Genetics, and a Jewish Family’s Secret

Lisa Marie Castillo

Genetic Counselor and Associate Professor of Medicine and Cardiology at Northwestern Medicine

Wednesday, Sept. 10

6 p.m. Doors Open | 7 p.m. Program

Tickets: $36

Includes Heavy Hors d’Oeuvres & Drinks

Kosher dietary laws observed

Tickets with book purchase: $54

Includes a signed copy of The Dressmaker’s Mirror

Register at juf.org/Sarnoff2025

Julie Mangurten Weinberg is a Chicago-based freelance journalist with 25-plus years of experience in broadcast, print, and digital media.