Researcher Linked Family Deaths to FLNC Gene Mutation

A Reno genetics professor identified a specific genetic mutation after investigating a history of cardiac deaths.

Updated on Sept. 19, 2026 in Heart Disease

Bold vector editorial illustration featuring a glass and steel DNA double helix, representing medical genetic research and health screening. — University of Nevada researcher Susan Weiss Liebman identified a mutation in the FLNC gene linked to hereditary cardiomyopathy after investigating her family's medical history. AI Illustration. Upload story photo >

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University of Nevada genetics professor Susan Weiss Liebman discovered that a mutated FLNC gene caused a pattern of sudden cardiac deaths in her family. Her research, detailed in a book published in late 2024, advocates for increased genetic screening to prevent similar tragedies.

Why it matters

Genetic testing can identify actionable markers that allow for preventative care, yet many patients remain unaware of their risk. Liebman hopes her personal investigation will drive broader public adoption of testing for those with a history of cardiomyopathy.

The FLNC gene mutation affects one in 800 Ashkenazi Jews, a group where 200 founder mutations have been documented. Currently, only 1% of cardiomyopathy patients in the U.S. undergo the genetic testing recommended by national guidelines.

The players

Susan Weiss Liebman

She is a professor of genetics at the University of Nevada who conducted research into her family history of heart disease.

Karen Rothman Fried

She was the niece of Susan Weiss Liebman who passed away from dilated cardiomyopathy at the age of 36.

American College of Medical Genetics and Genomics

This professional organization identifies and maintains lists of actionable genes that provide clinical utility for patient health.

The details

Liebman worked with heart geneticists to isolate the mutation after her niece, Karen Rothman Fried, died from dilated cardiomyopathy. By applying genealogy research to her own family history, she connected her father Norman's 1980 heart attack and her uncle Eugene's death to the underlying gene function.

1980: Liebman's father Norman died of a heart attack.
November 16, 2008: Karen Rothman Fried died from dilated cardiomyopathy.
Late 2024: Liebman's book detailing her genetic findings was published.

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Deeper Dive

The discovery follows the established clinical standards set by the American College of Medical Genetics and Genomics list of actionable genes. This work underscores the gap between current diagnostic capabilities and the low rate of actual patient testing.

Patients with a family history of heart failure may now seek genetic counseling to understand their own risk profile. Consulting with a specialist regarding the 84 currently identified actionable genes can assist in proactive treatment planning.

The takeaway

Genetic screening is a vital tool for families with a history of unexplained cardiac death or heart failure. Taking the step to consult a geneticist can turn a family health mystery into an actionable path for early intervention.